The Family Caregiver Forum
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Welcome to the NFCA's Family Caregiver Forum - a place where all family caregivers can post questions, receive support and communicate with others.



mollybear

Posts: 247
Joined: May 2009
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Saturday December 26, 2009 6:18 PM
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Hi Debbie-I'm glad to see you back online. I've missed everyone! I'm glad hospice is working out for you, my mom is just not too crazy about the idea, she's convinced that they will kill her. She calls them "Hostile"!! LOL!! crazy old bat is what she is! You're right I could use the support. Technically I'm okay with her when she's panicicky, being a nurse, I just worry about what to do if she dies at home. Who to call, etc.... For the attacks I too have a nebulizer and prednisone and lasix, etc... My mom thinks she will get better in time. Me and the doctor tried to tell her that she was end stage, but the denial is very strong, and she just thinks I want her to die. More than anything I just want an end to hers (and mine) suffering! This caregiving with no end in sight is getting old. Every year I think this will be the last Christmas and every year I can't believe it when another one rolls around!!
I read your other post on the depression thread. I'm sorry you're struggling with not working, I don't know what I'd do if I could'nt get out of the house to work, I'd go bonkers too! It sounds like you have some good plans in motion, so I hope everything will work out . Even though I'm chronically tired, it's the emotional isolation that wears on me, more than anything. Not having anyone to talk to is nervewracking. And even though I can "socialize" a little at work, I'm not real close to any of my co-workers. Not like I was up in Pa. It takes time and commitment to develope close friendships and I have had neither down here, unfortunately.
Hang in there---I'm hanging along with you!! Lynne
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Saturday December 26, 2009 8:33 PM
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Hi, Lynne, Debbie, glad to see you back on the forum. I was afriad that people may get discouraged and leave when the forum was down for a couple of weeks. I understabd that NFCA is reworking the forum so that it will have much less problems in the future.
Lynne, since you are ok with caring for your mother right now but worry about what happens if she passes away at home, I have a somewhat devious idea. Since you are a nurse, you probably can tell when she is slipping away. By then, maybe you can call in the hospice without telling your mother that they are hospice people. Then when she passes away, all you need to do is to contact the hospice people. When my mother had inoperable cancer at my brother's home, we all agreed not to tell her the truth, so that she can have as good a quality of life without knowing that the end is coming. We were going to tell her near the end, but never had a chance. During her last days, my brother did get hospice help, but I am not sure whether he told my mother that they are hospice people.
Hope that your health will hold up. Please do not think that you are getting old. Then how about me? I believe that you are quite a bit younger than I am. In fact, I do not know anyone in this forum who is older than I am.
Best Regards,
Min-Shih
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Tuesday January 26, 2010 9:00 PM
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Hi, Lynne,
I miss the larger welcome commitee, where each of us has some different perspectives t offer and we get to chat with each other. I probably do have a little bit more time than most, since I am retired and taking care of my wife is probably as not demanding. She still has some mobility left. Also my house is still messy. Soe of my time is cut into small bits and pieces, like waiting for her to finish using the bathroom or taking the medications, waiting for the water to boil, etc. Sometimes I simply need to sit down and take a break. I cannot possibly use these time to clean my house, so I go to my computer. I am actually a lousy typist, never learned how to do it. I use these bits and pieces of time to type my posts in bits and pieces into a program, like Word. Then when it is done, I login again and post it. I just hope that people do not get terribly bored of such a small welcome commitee.
I have not been the sleep cop for quite sometime. Instead, I find myself became some sort of a cyber cop. Wonder if you already know, the forum has been hit by SPAM quite badly lately. NCFA did a huge cleanup only a couple of weeks ago, and we got flooded again by last Friday, when NCFA did another clean up. Some folks and I have been reporting all the SPAM to NCFA. I did find a slight funny side of that. At least there is someone in the forum we do not want to be nice to. Muddy and I have exchanged quite a few funny messages and got som egood laugh, a comic relief.
I did see on the national news that Florida had a cold snap. The Michigan weather is just so so. We got a new days above freezing, and now back to the 20s again. We have not had any signifant snow, but I am afraid that it will catch up with us sooner or later. Where crazyiniowa lives (Des Moines) and where Jennifer lives (KC) have been hit really hard with snow, ice, and cold weather this winter.
Oh no, I do not wish the pacemaker to last any shorter. It should last as long as possible so that you do not have to take your mother to do the procedure one more time, no matter how long she lives. I was just sharing, and it is good to know from you that a pacemake can run full steam for 12 years. Then I do not have to worry about my sister in law as much. She is still relatively young, a bit younger than I am.
Sorry that you are getting more frustrated and tired. I wish there is some way to recharge yourself for another 100,000 miles.
Best Regards,
Min-Shih
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Thursday February 04, 2010 9:36 AM
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Hi, Lynne,
How did your mom's surgery to replace the pacemaker on Ground Hog Day go? You lived in PA before, and I am surprised that you hope the ground hog sees it shadow. Well, Punxetwaney Phil did not. It does not matter anyways, 6 weeks one way and month and half the other.
There is a post by thehappyhermit. The person she cares for insited that there are 36 doors in his house to the outside. I think that it can rival your mother's imagination of she being at the care center and they replicated a room just like hers.
I chatted with Lynne a little on Facebook. She asked me to say hi to everyone. She says that she will come back to the forum, after a few things and after she finds the password, which was on the computer being repaired. Hope that we will see her soon.
Best Regards,
Min-Shih
Edited: Saturday February 06, 2010 at 10:12 PM by rzxq2y
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Monday February 08, 2010 9:18 AM
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Hi, Lynne,
Yesterday must be special, and I missed all of you. Hope posted, you did, and then Lisa came back and did, but I did not even check the forum. Honestly, I was not watching Super Bowl. Besides the usual chores, I went grocery shopping in the morning; went with my wife to the local Parkinson;s support group in the afternoon, and tried to catch up with a bunch of stuff that needs to be done. After my wife's first call at night, I just dropped everything and went to bed. I remember that I woke up and answered the secon call aournd 11:30. I was groggy and grouchy while helping her. The next thing I know, it was 6:30 in the morning. Allegedly, I told her not to wake me up, and she did not succeed in waking me up between 11:30 and 6:30. Got 7 hours of uninterrupted sleep and ready to get going today!
The snow may finally catch up on us. We are suppose to get 6-10" of snow Tuesday through Wednesday. It is nothing compared with the recent snow storms in southern plains and mid Altantic states. It is also nothing compared with what crazyiniowa and jenlynnkc1 got. They have been shoveling snow nonstop. I have not decided whether I am going to shovel or I will take out my snow thrower this time.
Best Regards,
Min-Shih
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mollybear

Posts: 247
Joined: May 2009
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Friday March 26, 2010 11:06 PM
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Hi Everyone-I haven't been posting much because I've been pretty busy. This past weekend my mom was doing poorly and she FINALLY consented to hospice. So they enrolled her on tuesday. This week has kind of been a whirlwind of people visiting from hospice trying to get everything set up. I honestly don't know how much longer my mom has, it's very hard to tell, given her history for the dramatic!! But I figure she must not think she has much time, since consenting to hospice was a monumental decision for her. I've notified my siblings and so far none have flown down !! LOL!! So I guess, like always,I can't count on them too much. This dying one day and better the next, is starting to wear on me-it's kind of like an emotional rollarcoaster. I'm getting to hate taking care of her, yet I also fear the monumental task of cleaning out her house and getting it ready to sell. "They" were right when "they" said be careful what you wish for, I'd like to get my life back......but it won't be easy, and a part of me is dreading having to deal with all the aftermath.
Just thought I'd give you an update. I haven't been posting much, but I do log on every few days to try to keep up with all of you. It dos'nt seem like they've fixed the spam problem. those people who have the time for that, need to definitely "get a life"!! LOL!! Lynne
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Saturday March 27, 2010 8:07 AM
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Hi, Lynne,
After reading your post, I really do not know whether to wish a peaceful closure or to wish your mother living long and prosper. It must have been quite difficult for her to accept hospice care, but at least you will be getting some help. About your siblings, I guess that they probably think that she still has more time yet. Just hope that they will not wait until after she passes away and you cleaned up and sold the house, and then show up to claim a piece of that. I also hope that you will find a way to keep all your fathers tools.
About the spammers, it is their life. The spam messages are probably posted here by some spam company using automated programs, a.k.a. spam bots. There are such companies charging a fee to post website references to all the public forums, message boards, blogs etc. The messages are not even meant to be read by human, it is just a way to increase the search engine ranking of the websites, quite disgusting. The spam bots are quite difficult to defeat. Once defeated, a new improved version will come up. NFCA has been cleaning up the spam quite frequently. But just as soon as they are all cleaned up, a new crop shows up. Also sometimes spammer do test runs of spam bots by posting some generic messages. Somehow I have a sneak suspicion that you might have posted a reply to such a message. I fell for it before.
Oh, Lynne, I start to miss you already. Please please stay in touch with us no matter what happens.
Best Regards,
Min-Shih
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mollybear

Posts: 247
Joined: May 2009
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Sunday July 18, 2010 11:27 PM
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Hi Min Shih-I'm sorry I have'nt logged on in such a long time. My mom passed away on May 30th and it's been a constant blur of activity since then. We had the funeral mass and viewing down here in florida and then last week we had her burial up in Virginia at Arlington Nat. Cemetary with my Dad, who passed in 2005. After the burial I rode back with my sister and her kids to Florida and they were able to take some furnature and stuff. There seems to be endless amounts of stuff!!!!! I don't think I'll ever come to the end of it!! It's overwhealming trying to decide what to do with it all. My brother will be back in august sometime to take some other things. Even though my Dad had made a trust, we still have to probate the estate because he forgot to file the quit claim deed to the house and some land they owned in North Carolina. I found the signed and notorized copy in the will and trust papers and it is the original and I don't know how or why it didn't get sent back to the lawyer in 2001. So it took some running around to get a new lawyer and start the probate proceedings.
So far I am doing well, I have my moments when I'm tring to deal with all the stuff!! But I don't miss my caregiving role at all!! It's nice to have my freedom back, after ten long years. Interestingly I miss my Dad now more than ever, as we were very close. My Mom, not so much, as she wasn't much companionship in the last year. I just hope she is at peace now. I have her pets to deal with also and that is difficult. She had a dog, cat and a cockatoo!! So now I have 2 dogs, 2 cats and a cockatoo!! It will take me a year to regain some sense of normalcy as my house is still a mess. I keep telling myself it took 5 years to get that way and I can't do it all in a month.
I hope you and your wife are doing well, I haven't had time to read back through the posts. You are ever faithful in your concern and I appreciate your asking about me. I hope your summer is a good one and I'll try to stop by periodically to see how you all are doing. Free again---Lynne
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rzxq2y

Posts: 1603
Joined: Jun 2009
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Wednesday July 28, 2010 3:27 PM
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Hi, Lynne,
Please accept my condolences for the loss of your mother. I can see from your post that now you are facing the things you dread, After those are done and your own house is cleaned, I hope that you will get your life back.
I just got a Facebook message from Lynne, sad news. Her husband Gary passed away last night. She will try to stay in touch with everyone.
My wife and I are doing ok. We are basically doing our best to fight a losing battle, so that we will lose it as slow as possible. After being more or less stable for a year, she has lost more of her mobility/ Off and on I need to made modifications to our house to overcome her mobility problems. Sometimes it seems that just soon after I solved one problem, another one crops up. Right now, I am making the house wheelchair accessible, since there are times she has trouble negotiating the two small steps to get in and out of the door. We can only do our best, seeing the doctors and doing the exercises regularly. Oh, our house is still a mess.
Best Regards,
Min-Shih
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