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Topic Title: Taking Care of Mom Part 3
Created On Friday December 25, 2009 11:49 PM
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mollybear

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Friday December 25, 2009 11:49 PM
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Hi everyone glad to see the forum is back up. Like everyone else has said I didn't realize how much I missed it until it was no longer available!! Hope you all had the best holidays that you could!! I pray that the new year will bring us many blessings and fewer hardships.

I'm working today, so we celebrated Christmas quietly yesterday. My mom is stable but her shortness of breath is getting worse and there is no more oxygen than 5L to be given at home. The doctor mentioned hospice again, but it pretty much went right over her head. She gave me a script for Ativan to help her if she gets panicicky. She's pretty much in end stage COPD. Hard to know if this will be her last Christmas or not, since she is the eveready bunny!!!

I had a scare on wed. when I went for an endometrial biopsy. The doc was not able to get a good specimen so I have to have a D&C and hystoscopy done in jan. I'm back on the cancer rollacoaster again this year. It is so hard to take care of our own health problems when we are caring for someone else. I'm dreading the possibility of surgery as I don't know what I'll do with my mom. This getting old, as my mom says, is not for the fient of heart!!!

Hugs to all----Lynne
 
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motherskeeper

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Saturday December 26, 2009 5:34 PM
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Hi Lynne,
I am happy to see this site up again too. Actually, I didn't even know it was down just thought people were not writing which was very strage.

My mother also has end stage COPD and I have her in Hospice. They are a life send. When she goes through her shortness of breath we have tools that they give us. Morphine nebulizer, morphine under the tongue, predisone and a relaxant pill. After about an hour she comes out of her spell. She has these spells more and more frequently but so far the treatments have helped. Also, the nurses are on call 24/7 and they come by almost immediatly when I call them for these shortness of breath episodes. They work with her to get through them. She gets so nervous and has to take her Ativan too. I hope your Mom will consider Hospice - if not for herself for YOU. They also come out twice a week and give her a shower. I feel like I am not so alone in caring and there are others there for back up.

I recently got sick myself for two days and was unable to get out of bed even to give her her treatments and medicines. But, amazingly she got out of bed and was able to get her medicines.

Sorry to hear you are going throught some hardships and I hope you can find some back up care so you can take care of yourself. You are so right that it is hard to take care of our own health issues. I am just now (after about 5 years of negleting my health) starting to go to the the doctor.

Anyway hugs to you and hope things turn out ok. Debbie
 
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mollybear

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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

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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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mollybear

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Monday December 28, 2009 8:30 PM
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Hi Min Shih-thanks for the kind words regarding hospice. I don't know why she is being so stubborn about it??!! But since she still has most of her wits about her, I have to honor her wishes. Hospice in our county requires her consent, so at this point I can't even trick her into it. I'm trying to be patient, but it is very hard. I suspect her lungs wont last too much longer because she's on the maximum O2 now, but who knows, I've been wrong for a couple of years now!! LOL!!!

And you know that expression-you're only as old as you feel ? I may be younger than you, but I'm aging at lightening speed!!!! LOL!!

Have a good and peaceful new year! Lynne
 
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motherskeeper

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Tuesday December 29, 2009 9:41 PM
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Hi Lynne- just checking in to see how everyone is doing. Your mother doesn't want hospice because like you said, she is in denial and thinks she will get better and hospice is for those who can accept the fact that they are not going to get better. That is all I can think. Hospice has a stigma attached to it from the old days but it really is all about keeping her MORE comfortable which may be a good selling point for you. Do some research on it and present her with the fact that she can always change her mind at any time and stop hospice and go to the hospital if she wants. This is what they have told us anyway. But like you said you have to accept her decision.

I understand wanting things to end also. I don't know why but this hanging on for life when there is no quality of life is hard for both me and my mother. She has no life and neither do I. I mean it's like being in a constant state of limbo of waiting. I love my Mother dearly but this is the hard part. At least once death comes you can grief and go on to acceptance and get past the constant present inturruption thought process nagging at you all the time adding worry and sorrow like a rollar coaster ride of up and down emotions.

Min-Shin - good to hear from you and hope you are having a nice relaxing evening. Hope your wife is doing well . I am still determined to keep up with my promise to myself to try and stay more positive. I am reading a lot of book on death, griefing and caretaking and education is helping me to understand all these mixed emotions. At least you can put a label on how you are feeling instead of feeling all jumbled up all the time.

 
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mollybear

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Saturday January 02, 2010 6:21 PM
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Hi Debbie-I just finished reading the 36 HOUR DAY. It's about dementia and Altzheimer's but a lot of it applies to just every day caregiving. My mom has mild dementia, along with everything else. What frustrates me the most is I never really know if she can't do somthing for real or she's just exaggerating. My mom has always been a bit of a hypochondriac and now she has REAL problems. But for me it's like the little boy who called wolf too many times-or the chicken little syndrome, and I have a hard time not being angry with her for what she can and can't do. Early on after her stroke and broken hip she laid around alot and now she has absolutely no muscle tone from being in bed so much and I find myself having to do all of the WORK of getting her up and down. It's the not even trying that really bugs me. Sometimes I want to say to her, if you're not going to even try then why don't you just die??? I feel like she just hangs on out of spite!! My dad was sooo different from her. I think he knew he was dying when he was in rehab and 2 days after he came home he went into Hospice. Because my mom was bedridden and technically I didn't live in their house, he was admitted to the Hospice care center where he died 5 days later, and I think that is why my mom wont do Hospice. Regardless of how much we try to tell her she dosn't have to go to the care center, she's convinced that they will make her go. Some times she has these nightmares that she's there and no matter how hard I try to convince her that she's at her own house-I don't think she really believes me. One night I had to put her in her wheelchair and ride her to the front door and open it so she could se the neighbor's house!!! She was convinced that they made a room just like her's at home , a duplicate at the care center!!! It's hard to argue with CRAZY!!! LOL!!!

How were your holidays? Mine were very quiet. I worked both and we "celebrated" on the eves.

Keep up with those be kind to Debbie resolutions!! <<<HUGS>>> Lynne
 
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rzxq2y

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Saturday January 02, 2010 9:10 PM
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Hi, Lynne,

Wow, your mother has quite an imagination there in thinking that the care center replicated her room there. Was she ok otherwise that night, or was she in some confused state?

Best Regards,

Min-Shih
 
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mollybear

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Monday January 25, 2010 10:36 PM
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Hi Everyone-I havn't posted in a while because things have been so hectic. I had a D&C done last week but thankfully it did not show any cancer. So I guess I lucked out yet again, which is good because I really don't know when I'd find time to have a hysterctomy!! LOL!!

My mom is holding her own, she is still having trouble breathing at times, but so far I have not had to give her the Ativan. On Feb 2nd she has to go in to ambulatory surgery to have her pacemaker replaced. So next week I have to take her for the preadmission testing. I guess after the pacemaker is replaced she'll be good for another 100,000 miles!! I was sort of hoping she'd "kick the bucket" before the battery wore out, but I guess the Good Lord has plans for her yet???? In my wildest imagination I can't quite figure that out!! LOL!! Oh the mysteries of life!

So basically it's still the "same ole same ole", I'm just getting more and more tired and frustrated with my life in this holding pattern.

Hope everyone has a good week. Lynne
 
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rzxq2y

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Tuesday January 26, 2010 10:06 AM
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Hi, Lynne,

It is so good to see an old friend posting. Miss your humor. I am glad that your D&C came out clean.

Hope that your mother's pacemaker replacement goes well. One of my sisters in law had a pacemaker put in several months ago. She had a heart attack just when she was in the cardio unit waiting for the procedure, so at least she was at the right place at the right time. For quite some time, her pacemaker was running 80% of the time, which would not make the 100,000 miles last very long. Fortunately now the doctors foumd the right medications for her and the pacemake is not on that frequently any more.

I see Lynn developed a new hobby in playing zoo in Facebook. She has not been back in the forum for a long time, neither has Lisa.

Hang in there.

Best Regards,

Min-Shih
 
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mollybear

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Tuesday January 26, 2010 6:30 PM
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Hey Min Shih- I know you're trying to make me feel better suggesting that 100,000 miles wont last too long--but I'm sorry to say that she has been 100 % paced for 12 YEARS NOW and just now needing a replacement!!!!!!! With my luck they will put in a new model that has an even longer battery life! Thank God for modern medicine!! NOT!! LOL!! I'm still convinced she'll outlive me!! You just have to laugh!!

It seems like you are now the official welcoming "committee" for the forum, and I must say you are doing a terrific job. I just don't know how you find the time. You must type REALLY fast. I find myself checking in periodically, but I haven't been able to post much.

I too miss Lynn and Lisa-I hope things are going well for them. How's your weather been this week? I hope the ground hog sees his shadow, even Fl has been cold this year! But probably nothing like Mich. I bet !

Have a good night-Lynne
 
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rzxq2y

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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

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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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mollybear

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Sunday February 07, 2010 8:47 PM
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Hi Min Shih- The surgery to replace my mom's pacemaker was uneventful. It was just kind of grueling for me because I worked monday night and stayed up because we had to be there on tues at 6 am, which meant I had to get my mom up at 5 am. There was no way I could just sleep for an hour!! After we got home around 1 pm I dozed on the recliner off and on, but I wanted to stay at her house to keep an eye on her. Didn't really get home to sleep til around 2am wed. So it was a long day.

I'm at work right now and I haven't got to post or read much because I've been really busy. I hope your weekend is going pleasantly. Any snow? The midatlantic states got hammered this year!! I'll bet they can't wait for spring. Even in Fl it's been a nasty winter, cold and rainy, which is unusual for us. I guess I can't really complain, I just miss the sunshine-not that I ever get out that much!! LOL!! Take care--Lynne
 
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rzxq2y

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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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rzxq2y

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Wednesday March 10, 2010 10:39 PM
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Hi, Lynne,

Have not heard from you for over a month. Hope that you are ok and just very busy. We miss you!

Best Regards,

Min-Shih
 
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mollybear

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Sunday March 14, 2010 8:43 PM
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Hi Min Shih-I haven't been around much because I've been pretty busy both at home and at work. Nothing much new in our neck of the woods, hope you and your wife are surviving this very harsh winter. Even in Florida it's been nasty!! My mom is declining over time, I have no idea how much longer she'll hang on, but her lung function is very poor.

My sister's daughter had a baby girl on 3/10 and both are doing well. It was fun to shop for girl baby items. I haven't done that in 27 years!! The last one's we've had in our family have been boys.

I have to go back to work now, just wanted to let you know I'm alive and kicking and thanks for asking. Lynne
 
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mollybear

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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

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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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rzxq2y

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Sunday May 16, 2010 9:43 PM
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Hi, Lynne,

Hard to imagine it has been almost a couple of months since we last hear from you. Is everything more or less the same, and how does the hospice care work out for your mother? We miss you.

I finally made some small progress in putting my house in order. One of my sister-in-law and her husband visited us for a week. She helped my wife sorting our 8 bags of clothing and donated to Goodwill Industries, while he helped me cutting down 2 truck load of unwanted growth in the yard and took to the recycling center. We estimated that it will take at least 100 hours worth of work to clean up the basement. I think that I will do one hour at a time, and maybe next year when they came, we can finish the job. I do not want leave the job to the children of someday something happens to us.

Best Regards,

Min-Shih
 
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mollybear

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Friday May 21, 2010 9:52 PM
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Hi Min Shih-thanks for inquiring about me. I don't log on that often, anymore. It has been over 8 weeks now that my mom has been in hospice and I can't believe how fast the time has gone and also how slow the time is gone--if that makes any sense. It is horrible watching a slow death. My mom hasn't eaten anything in about 5 weeks. She takes a little applesauce or pudding but not enough to live on!! She has been totally bedridden now and has no use of her legs. I am enormously frustrated and will be very glad when this is all finally over. My dad's death was much quicker and much less stressful. Every week I think she will die that week--but then she just keeps hanging on.
I hope when my time comes, I die quick-like in a car accident. This lingering is maddening to watch.

I wish I could be a little more upbeat-but my patience and stamina are wearing thin. I'm glad to hear you've made a substantial dent in the house cleaning. I on the other hand have not done much of anything, except for some outdoors work replacing some plants that died over the winter, and the never ending chore of weeding that we have here in florida!! Hope your summer is pleasant and I'll let you know if anything changes--Lynne
 
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rzxq2y

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Saturday July 10, 2010 10:24 PM
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Hi, Lynne,

It has been another 8 weeks. How are you doing? I suppose that nothiong has changed?

We miss you here. Also you missed some good chances to give your advice to RUN.

Best Regards,

Min-Shih

Edited: Saturday July 10, 2010 at 10:24 PM by rzxq2y
 
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mollybear

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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

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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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mollybear

Posts: 247
Joined: May 2009

Saturday July 31, 2010 9:21 PM
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Hi Min-Shih, It seems like we as caregivers have to be very innovative and imaginative when dealing with our charges changing physical status. I was very fortunate, living in a senior community, that we had some guys who were willing to build a wheelchair ramp for us for just the cost of the wood. I wish I could ship you ours! They do have portable alluminum ones-but they can be pretty expensive. Good luck with your next "project" anyway. You're right that it is never ending, in my case my mom is gone and it's still not over!

Thank you for the heads up on Lynn's husband Gary. I was able to find her full address and I'll be sending here a note via snail mail. I don't have internet service yet at home and I've cancelled my mom's, so I only get to log in to the forum when I'm at work.

Please know that I'm thinking about you, even if I don't come by too often. This forum helped me get through some of my darkest days to maintain my sanity. and you all have a special place in my heart. Take care and enjoy the rest of your summer--Lynne
 
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