HealingWell
Search Close Search
☰

Caregivers Sharing Thread #7

Support Forums
>
Hepatitis
✚ New Topic locked
12 3 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/22/2011 2:56 AM (GMT 0)
Hello.  Starting #7.

I hope everyone is making some "me" time and doing something for themselves.

Emma

Posted 10/22/2011 3:11 AM (GMT 0)
Thanks for the new thread, Emma.  I've locked the old one.

Hugs,

Connie

Posted 10/22/2011 3:28 AM (GMT 0)
Thanks Connie.

I hope you are working your way through the to-do list...so you can be ready to do nothing other than RECOVER when you get that new liver! Prayers for you every day!

Emma
Posted 10/22/2011 4:36 AM (GMT 0)
Hi angie ..yes I got some much needed rest ....and today I went grocery shoppping had lunch with my best friend ....played ball with my boys and then walked two miles ..al is doing great and getting physical therapy everyday ..he has a appt to see liver doc next Tuesday at other hospital ..wondering how that's gonna happen .....me and the boys will go up to hospital tomorrow and stay at apartment near by ...hope everyone has a good weekend....

Natasha ....everyone has to make the best choice for themselves...as long as you do what you feel is right in your heart don't worry what anyone thinks ..its not their life ....I cant imagine dealing with all this that we go through if it was self inflicted...I wouldn't ...hope you get some relief soon ..let us know how things turn out ...

Angie .....good luck with that ... I'm terrible at putting things back together ..I'm sure that is frustrating ...al wanted his electric razor to cut his hair really short ....I was like uh no not by yourself ...wait til one of the guys come up ....sometimes its the little things that count ....or its the straw that breaks the camels back ....

Connie ....did you get your glasses yet ..do u have everything ready for when you get that call soon :)

Carol how is mike doing solo ? Is he moping yet ....lol

Emma ....glad to hear that hubby will soon be done his job at the bar ..I'm sure that will be great relief .....

Post Edited (blonde504) : 10/21/2011 10:40:08 PM (GMT-6)

Posted 10/22/2011 5:02 AM (GMT 0)
Elle, I imagine he will be transported by ambulance or some other transportation to the appt. next Tues. Very glad to hear you got some time free today.

Emma and Elle, I washed the robe and nightie I got for the hospital and packed them. I have most everything packed. Need to get my toiletries bag packed. I know they provide some of these things in the hospital, but I like my own brand of mouthwash, etc. I have some sample sizes of toiletries, as well as small bottles to pour stuff in....same things I use when flying.

I need to complete my lists of who is to call whom. It will be split between 2 people.

I made 3-bean chili today to put into individual serving containers and freeze. I've already made some ratatouille and have it in the freezer.

Hugs,
Connie
Posted 10/23/2011 4:23 PM (GMT 0)
Sounds like everyone IS taking care of themselves.

I am still in CT with daughter, 3 grands, and her recovering knee replacement. She is a rockstart and after only 10 days is off the crutches and hobbling around.

We had a family dinner yesterday, 2 kids, 2 sil, 1 ex-dil with good relationship, and 6 grands. Plenty of food and plenty of fun.

Daughter starting back to her work at home furniture restoration and repurposing business a little at a time. She makes stuff from stuff...benches from old beds and cribs and small dressers. She paints them really cute pottery barn colors and makes cushions with really really cute fabrics. We went to the salvation army and an auction and found some cool old stuff for cheap that will make cute projects when she is up to standing and painting, etc. She works out of the workshop in their garage and is hobbling around this morning estimating how much stuff she needs at hardware and fabric stores. I can't believe she is hobbling around so well.

Talked to Mike this morning. He is doing well alone in FL. Even took himself to orthopedic doc in Miami this week. As he feels better he is wanting his torn rotator cuff to heal so he can play golf...eventually... He is back on his lasix with swollen ankles and is needing more insulin...I suspect he is eating more fast food and sweets that he might if I were there.

Here I am the pain in the butt NANA who makes you brush your teeth and do your chores. I am a meanie kill joy wherever my caretakers broom sends me!

Hi to all caregivers and patients...do something goood for yourselves today. I am going to carve pumpkins for fun...and roast pumpkin seeds! For fun.

Carol
Posted 10/23/2011 4:37 PM (GMT 0)
Carol,
Really enjoyed reading what a good time you are having and how well Mike is doing. Told hubby about Mike and he always asks me how the "transplant guys" are doing. Good to hear Mike is doing well and driving to Dr. himself. Wow. That is encouraging to my hubby who still is holding off on an evaluation for transplant.
In an earlier post, I was asked why my hubby doesn't want a transplant. I posed the question to him, he is thinking about the answer and he said when he figures it out, he'll tell me and I can post the answer. We just watched movie "Blood Diamond" together this morning, and hubby is "with it" this morning, so we were able to have a conversation about conflict diamonds and situations in Africa and what is happening with all the countries overthrowing dictators. It is soooo nice to have an adult conversation with my honey, after so many months of "did you poop today" "how many times" etc. It's a good day already.
Carol have fun carving pumpkins...ahhh Halloween, our favorite holiday. Good day to all.
Angie1953
Posted 10/23/2011 6:42 PM (GMT 0)

Carol, sounds like you are having some fun, even while playing the Evil Witch.  It also is encouraging for me to read how well Mike is doing, even after the problems he's had.  Transplant doesn't scare me, but the things that can happen afterwards do.  Good to know that they can be resolved.

Your daughter sounds like my sister--very creative and skilled at making things.

Angie, so good to hear that your hubby is "with it" today.  Hang onto times like that when the bad days come.  I will also be very interested in hearing what his answer is regarding not wanting transplant.  Have you told him that he can change his mind, even if he's been evaluated?  He just shouldn't tell anyone that during evaluation. 

Early on during evaluation, I had a meeting with the SW.  When she asked why I wanted a transplant, I told her truthfully that I did not; however, the docs had told that I must have one if I wanted to live, and that I decided I would like to live a little longer.  But in the back of my mind was the idea that I could opt out at any time.  If he trusts her and connects with her, the SW is one person he can be upfront with, without jeopardizing anything.  By the end of the evaluation, I was actually excited about getting a transplant.  At this point, it takes such a major effort to do anything physical (grocery shopping, cleaning, etc.)  I just want to feel somewhat normal again.  It's been 20 years since I felt okay and had energy.

Emma, forgot to answer your earlier question about eyeglasses.  I have decided to wait and get by with these for now.  It will take too much time and travel to do it now.  They do both a contact lens and eyeglass exam and give me Rxs for each.  I usually end up having to go back at least twice for adjustments.

Hugs,

Connie


Posted 10/23/2011 9:51 PM (GMT 0)
Connie,

  In reading your post I note that you say it takes so much energy to do grocery shopping, cleaning etc.  I am totally surprised you are able to do these things at all.  My hubby hasn't done these things since Feb 22 (maybe wash dishes 6 times and vacuum once), when he crashed. 

   Good for you!!  He reads, listens to radio, watches movies on and spends time on computer and phone talking to his family and friends, and he used to hold the hose to water the horses (not anymore since Fall arrived).  Maybe he doesn't want a transplant because this way he doesn't have to do anything except exactly what he likes to do!!    Mmmmmmmm   Can't wait to hear his answer as to why he doesn't want transplant.

  Prior to his crash, he did all the shopping, laundry dishes and horse care, etc while I worked.  I have told him that he can opt out of a liver right up to day they find one.

  ON ANOTHER SUBJECT: I just read that there are trials for a new drug for HE and they are looking for people with ESLD (that meet their requirements) to participate.  Trials are ongoing at 20 locations and one is Omaha, where we go.  However when I checked on it, we would need to travel there once a week for 5 weeks. Yikes...700 miles round trip each time.  Not too feasible for us.  If anyone else is interested, let me know and I'll forward the info to you.  The closing date for participants is Oct 31.

Angie1953

 

Posted 10/23/2011 10:07 PM (GMT 0)
Sounds like everyone is having a pleasant Sunday.

Carol, it is so nice that you are able to enjoy extended family and help out. I am sure that they appreciate it very much. I think you are due for someone to pamper and take care of you a bit! Good news that Mike is doing so well on his own.

Angie, I hope that your husband changes his mind. There's that exotic animal range that Connie mentioned. Maybe he could spend some volunteer time there...and there have been good stories of regained health and hope here from the other transplant patients. Maybe your husband can begin to envision some of that goodness for himself.

Connie, sounds like you are getting everything in order. Waiting for the call. I pray that the call comes soon!

Me and hubby are doing well. Working together on cleaning the house today. He is working in the kitchen and using pine sol. I hope it doesn't exhaust him. He says he is looking forward to a nap once the kitchen is done. I am working on...well, everything else! Laundry yesterday, grocery shopped on Friday night.

We are looking forward to his last week of work. Then we will have a party the following weekend. I am excited and looking forward to this next stage of our lives. He is having some mixed emotions. Something he will need to work through.

Emma
Posted 10/23/2011 10:31 PM (GMT 0)

Emma, is that party going to be WITHOUT ALCOHOL?  I think he might be tempted if his friends and coworkers are drinking.  Or is it just going to be family?

Angie, I live alone and have very little help (which I pay for), so I HAVE to do most things myself.  The reason I'm able to is that my liver hasn't decompensated.  It's the Hep C and liver cancer that drain me of energy...and I seem to get more exhausted every day.  Today, I've been fighting to stay awake and not go back to bed.  I have a cleaning lady who comes in once a month, but she only cleans the bathroom thoroughly and vacuums my wall-to-wall carpet thoroughly.  Those are chores that would be impossible for me.  Vacuuming pulls on my artificial hips, too.  I do the heavy traffic areas in between her coming.  I feel very fortunate not to have decompensated, as I really don't know what I would do if I had.  And people truly don't understand my fatigue, because I look okay.  Once in awhile, someone will tell me that I look tired (usually after a day at Mayo.)

That's why this forum is so great.  There is understanding.  People not involved with liver disease in some way are totally clueless.

Hugs,

Connie


Posted 10/23/2011 11:56 PM (GMT 0)
Connie,
Alcohol will be served at the party. We have talked about the possible temptation. The locale is small...and everyone who will be there knows about his health problems. I have decided not to worry about it. That doesn't mean that I am not concerned or that I won't be watching. Just that I am not going to obsess and wring my hands about it. We aren't providing any alcohol...who ever wants it will have to buy their own. We will provide soft drinks and the food.

My house is clean, hubby is taking a nap. So I am enjoying a few minute of quiet.

This last week of October is the last week of the big audit at my job that I am responsible for. It has gone very well, and I am very pleased with that.

Emma
Posted 10/24/2011 1:06 AM (GMT 0)
Glad to.hear everyone one is ok ..me and the boys spent the weekend up at the hospital and apartment near by ....now we are back home the boys have school tomorrow and al felt kinda bad yesterday ..but says he feels world of a difference today ..for the better thank goodness ...Monday ..physical therapy and ocupation therapy will be back to work with him and we have appt at transplant hospital for Tuesday ..I'm going to call his transplant coordinator to see how they are planning to transport him ..then that evening my son has a football game to attend for band at 6 pm ...so Tuesday will be crazy .......
Posted 10/24/2011 1:36 AM (GMT 0)

Very good to hear that Al is doing better today, Elle.  There will be some rough days ahead for you, but as long as he continues to improve it's worth it.

Emma, that's good that you aren't providing alcohol, and I hope people have the good sense not to offer Dougie any.  Glad to hear that work, etc., are going smoothly.

Hugs,

Connie


Posted 10/24/2011 4:10 AM (GMT 0)
Glad to see everyone is taking time to take care of themselves. I did the same today. I woke up this morning feeling completely exhausted (last week was crazy for me), so I just lounged around all day....took an afternoon nap, etc. My son, bless his heart, just played quietly while I rested! He built stuff with Legos, watched TV, read a book, etc. I am so blessed to have him, and that he's so laid back like that!

Tonight, had to be a big meanie to hubby! Some of you will remember a while back that I discovered he was not taking his Clonazepam the way it's prescribed, so I took the medication away from him, and told him he had a choice, to take it correctly or find someplace else to live. Well, I have ultimately taken to dispensing the meds for him and then have to hide the medication from him. He's been complaining of headaches more and more, and of course according to him, the Clonazepam helps them. Got into a HUGE argument about the medication tonight, he was begging me to give him more, etc. So, I had to stomp my feet and get ugly with him. Of course, he attempted to turn it back around on me.....thank goodness tomorrow is a school day for both my son and I !! LOL!

Yall take care

Mer

Posted 10/24/2011 6:40 PM (GMT 0)
My wife and family gave me a surprise breakfast party yesterday morning to celebrate my retirement. We all had a great time and enjoyed football and the world series later in the day. After so many years of getting up at 5AM, my eyes popped open at 5 this morning. It sure was nice to go back to sleep and not have to worry about going to work. I think I'm going to like this retirement gig.

Charlie
Posted 10/24/2011 8:31 PM (GMT 0)
Charlie,

What a wonderful surprise, and then to top the day with a Cowboys win AND a Rangers win!!! Good day all the way around! Hope your wife is doing well!! Enjoy the retirement gig!

Mer

Posted 10/24/2011 11:56 PM (GMT 0)
When I had to take over my husband's meds he didn't like it. He wasn't over taking them .........he was forgetting to take them sometimes. Like you Mer we got into a big argument about it too. I won that round.

Congratulations Charlie. yeah yeah yeah I am counting down to when I can retire......still have a couple of years yet though.....at least that's what I am shooting for.
Posted 10/25/2011 12:23 AM (GMT 0)
Congrats Charlie.  Enjoy your retirement!

Emma

Posted 10/25/2011 2:36 AM (GMT 0)

Very nice way to celebrate your retirement, Charlie!  You enjoy sleeping late!

PG, those last couple of years seem to be the most difficult for many.

Hugs,

Connie

Posted 10/25/2011 1:06 PM (GMT 0)
Charlie,
Enjoy the retirement. Sleep in for all of us that are still putting in those last few years. Party sounds nice.
Angie1953
Posted 10/25/2011 3:37 PM (GMT 0)
:-)  Thanks you'all for  the nice replies. After this past weekend she is worn down, she had a good time but used all her energy. She's resting most of the day this week. Other than being very tired, she is stable.

I have so many things to do around the house to get ready for winter, I don't know where to start, at least I don't have a boss giving me a deadline until COB friday to finish. I am really enjoying just being at home with my wife. We have just put ourselves in God's hands, we hope for the best.

Charlie

Posted 10/29/2011 7:19 PM (GMT 0)
hey to all, just checking in to see how everyone is doing? chalie, glad to hear you are having a quieter time at the moment, long may it continue!
angie,, hows hubby doing?
emma, hows things with you? has hubby got used to not being in that bar yet?
hope all are well.
i am much the same, solicitor told me a few things, divorce being one of them, all options are very long winded and will take time to reach the end the end result. i am stewing on a few ideas and then see him again in two weeks with my decision.
hubby is sleeping lots and lots again at the moment which makes life bearable but awkward!. when he does wake he is usually very grouchy and snaps a lot. we upped the lactulose but it really seems to have no effect any more. belly is swelling again and he looks and smells very bad again. starting lactulose and diuretics pulled him out of this last time but there is no get out of jail free card this time around and he still continues to drink so i guess downhill slowly is where we are headed.
on a lighter note, im sure you are all just as pleased and excited as i am to hear connies news!!, as david said in another post, she has helped so many of us on here and has been such a diamond she deserves this soooooooo much. lots of good thoughts and prayers for our connie.
xxnatasha,xx
Posted 10/29/2011 8:47 PM (GMT 0)
Natasha,
Good to hear from you. Sounds like you have some hard decisions to make. Here my Hubby is sleeping more. He just woke up and it's 2:00 pm, but I dragged him to a movie last night and it was exhausting for him....but he always liked Puss N Boots, so I surprised him and took him to the new Puss N Boots movie. We sat with all the little kids in the community and loved the movie. He had been in bed most of the time for several days before that so wanted to get him and around. Oh yea...my sister did find him walking down the middle of the busy highway in front of our home...Yikes..more lactulose. We are reaching a comfortable arrangement, he is no longer able to use the micro wave, tv, anything that takes more than one step..he can't think it through.
I am so happy about Connie getting a liver. Hope it's going well for her.
Charlie, glad things are smooth at your home..That's such a nice feeling, huh?
Emma, things going smoothly for you, too?
Later. Angie1953
Posted 10/31/2011 12:57 PM (GMT 0)
hey angie, scary stuff this isnt it?!. my hubby also sleeping more and more. not sure if that will stop or just go on?. im sure someone will be able to answer that for me, my trusty advisor connie is getting herself all better!.
hows things today angie? are you managing ok? what with the animals to tend aswel as caregiving you must be tired.

sandia,,,,,,,,, i saw you post for connie, would love to hear how things are going for you and your daughter. much better than previously i hope? have been praying for you both and everyone who finds themselves here on this wonderful forum.

prayers to all.
xxnatasha.xx
✚ New Topic locked
1234