January 2014 Surgery Sisters
Comments
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Thanks Eve, Diane and Anne for the support. It's been rough....really rough! On the first day, my older brother spent almost the entire night with mom and during the middle of the night she got up and was so disoriented and upset. After he left the nurse said she shoved and pushed the aide and refused to go to back to bed. Yesterday morning she paced the hallways for hours, asking where we were, when were we coming to take her home, etc. When my brother came she was just frantic and sweating profusely.
I think her agitation is partly due to an aide who is rough and unkind towards her. My brother said whenever he is on shift, the whole floor kind of goes into overdrive with noise and confusion and agitation. We all 3 complained to the nurse who is replacing the aide and is trying to work on keeping her better occupied during the evenings. Every day she begs us to take her home - tears streaming down her face asking over and over again - don't you want me? Why can't I Iive with you? Absolutely nothing we say will help her feel better. My brother says it just rips his heart out. I'm glad he is taking the brunt of it. He is the oldest and the most "steady" of us all. But he's tried everything - including outright lies to no avail. It just makes no sense whatsoever to her that we would leave her there. I'm staying away because I"m afraid I will take her by the hand and walk her out the door. I'm serious! I'm glad that my two brothers are only 10 minutes from the facility. For me it's about 1 1/2 hours, so much harder to get there everyday, plus I'm trying to make all my PT appointments. I call my brothers everyday to check up on mom. Thursday I will go see her. It will be a week...I'm counting the days.
One bright spot is that during the day she is much better. She is participating in activities and seems calm especially with the aides on the day shift. One in particular really seems to adore her. So that's something to hang onto. But wow, this is much harder than I thought it would be!
~Mary
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Ann - Good luck with the Taxol, and YAY on your exchange being booked. I'll be it feels good to have it ahead of you. October will be here before we know it.
Okay. We're hav'in a heat wave, and not a tropical heat wave (singing)...Yep, it was 96 today and there is no AC at the TKD studio. Needless to say, I sweated BUCKETS. LOL...my uniform was drenched and I literally had to peel it off...I know TMI. Can you sweat away the oxidants?
Happy only 3 days of work left this week day!
Diane.
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Mary, nothing I can say would be what you haven't heard. We went thru the same with my mom when we had to put her into a retirement home. She was overmedicating herself and calling for an ambulance nearly every week. It finally got so bad her doctor said we had to do something. My brother lived 3 hours away and he was the closest. He moved her by ambulance and rode with her to a really nice place. She had the beginnings of dementia but I think she had always been unstable. I got there just a few days later with her personal clothes and items. My daughter and my niece (she was a social worker in a nursing home) was with me. There my mom sat, right by the front door, looking wild and furious. She started yelling at me, threatening to kill everyone on the spot, said she just needed a gun. It didn't get any better for weeks. I kept having to go outside and cry that day. It does break your heart and it will for awhile. She's been gone for eight years and I still wish I could have made her well enough to take her home. But there was no choice and none of us had the skills to take care of her. That was her home for ten years and she didn't like to be away from there for very long! It became a safe place for her, a type of security that she came to realize she could have never had on her own.
So, you will make your own stories on this journey. Her success is a little at a time, starts out days, then weeks, then months and so on. Your mom will slowly begin to adjust to a different lifestyle and phase. In the meantime, be gentle with her and yourself. Maybe later you can get her something to listen to music with or audiobooks...whatever might take her mind to a happier state. I wouldn't try to convince her this is for the best or give her all the "why or why nots." That made Mom so mad that she'd get in our face. Just hold your mom's hand and let her talk, or cry, or whatever she needs. Take her for a walk, ask her questions, let her show you around. Just like she might have done on the first day of school with one of you.
I'll pray for you both and know she loves you very much, as you do her!
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And Mary, just like us, nights are the worst! For her, it must be the scariest thing ever. She doesn't know those people, she doesn't have trust there, yet. Get rid of anyone that makes her fear. And make sure she is getting something to help her sleep!
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Thank you Polly!
Such valuable advice from someone who's been there (just like with breast cancer).
There are so many emotions with this move right now on so many levels. I feel like I am grieving the loss of mom - as she was - but at the same time I have to be present with who she is now. So hard to do. And it is so sad to see her struggling so fiercely to get back to her family. My heart is aching.
I saw this coming, but I guess I never thought it would be so damn hard.
Hugs to all!
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Wow, Mary, how stressful for all of you. Thankfully, I have never faced anything like this, but I do know several people who had to put their handicapped children into facilities as the children got bigger, and the parents got older, leaving them physically unable to care for them. I know in both cases, the children felt unloved and abandoned for a while, but once they realized the change was permanent, they not only adjusted, but came to love their new situations. In fact, in one case, the parents told the "child" they were taking him on vacation and he told them he couldn't leave. He had responsibilities and friends that depended on him. Change is hard for most of us, and most especially changes we don't understand, like the death of a loved one. Your mom is going thru the "death" of her home. Let her grieve, then encourage her to move on, as we all must eventually. Most of all, remember why you and your brothers made this decision in the first place- you all love her and want her to be safe. That is a good decision, even if she cannot see that.
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Thank you Anne! That really makes sense to me - to let her grieve the loss of her home. It's something she has to go through...as painful as it is.
I just worry that the facility itself isn't doing the job they said they would. It's going to take some tweaking, I think, because the memory care unit just opened and the staff is new there. It just makes me wonder if we made the right choice as far as the facility. You can never know until you get in there! But I'm sure we'll all settle into a new routine soon enough.
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Ok, here's a question - sort of - for those of you who've had exchange surgery. I'm feeling very vulnerable and fearful. Maybe it's the upheaval with mom, or maybe not...
I have this huge fear that there is cancer lurking and that it will be spread during my surgery. I'm just really scared, I guess, like all of you. Beverly's probably on the table right now....we've all been there and faced our fears and have done just fine so far. But this time seems so different from my BMX when I was, quite honestly, actually looking forward to having it done and getting rid of the cancer. The PS won't be looking for cancer. He gets mad at me whenever I mention the C word - because that's not his job. Yeah, he's kind of a jerk. Anyways...just wish I could have a scan and be pronounced clear, although I realize that even then, there's no way to pickup microscopic cells.
Just going through a rough time right now. Thanks for letting me vent.
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Oh dear Mary,
So many anxious moments. I am fearful too. It comes on in the middle of the night, when I haven't taken the Ativan. oh well.
Anne is right about letting your mom grieve but to take that further you need to grieve also. There has been so much loss for you lately that you can't possibly hold it all in.
My lovely Aunt had to go into a "home". She had dementia, my cousin just was not able to care for her at home anymore. It took a few months but Aunt Annie, came around and started flirting with the boys...male nurses and staff. So funny they just loved her. At one point she really started going downhill. and we thought she was close. Lo and behold , it was discovered she had a bladder infection. Once that was cleared up...she came back and lived another 2 years...having a good time and being her sociable self.
I have a bit of a suggestion, you have your blog. How about handing out your web address to other people that have a loved one at the center and invite them to share their experiences with their family member and the care being received. That way you all have a place to talk privately about your concerns and experiences. Oh, hmmmmmm, kinda like here.
It could be a good outlet for you. Just an idea.sending you big ((((hugs)))))
Eve
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Mary - Real quick, because I'm at the office on a short break... Please try not to worry. My bs says that if there is a reoccurrence it will most likely be felt on top of the implnats. I feel Ike I have a much better chance of feeling somethis now that I've had my exchange. Your PS won't cause anything to happen. I know its scary, but you will feel better without the TEs, I promise. Hugs my friend!!!!
dian
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Thanks, Eve. Maybe I need to get some Ativan!
But you're so right. I'm grieving, too.
Oh hey, maybe there's a thread on this site for that....there seems to be one for every cause! I'll take a look.
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Mary,
The Ativan is wonderful. It really helps me. I only take 0.5 mg at bedtime, and I sleep pretty well. I don't take it during the day even though it was prescribed to take 1mg 3 times a day...not sure I want to be THAT laid back
Doesn't hurt to ask.
love you, Eve0 -
I just put in a call to my PCP
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good job.
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Diane,
Yes, that would make sense typically, but in my case my TE's and implants are on top of the muscle. I'm not sure why he does them that way, but it's something I didn't really think about until after it was done. I will be bringing this up in my pre-op on the 15th. But yes, the implants will be softer and I may just have to press harder during SBE's.
Normally I'm not scared of surgeries. Piece of cake - just show up.... what's the big deal? I think it's just been so long waiting and now it's finally almost here.
I'm just like my mother. I'm a worrier, that's for sure!!
And yes, some Ativan wouldn't hurt!
Thanks for all your support ladies!
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Mary, don't you just hate doctors like that? Getting all huffy with you? You need to let off some steam! If he doesn't like the word "cancer" too bad. Without it, you wouldn't be sitting there helping to pay for his house. It's your cancer and you own it so if there is a fear like that then he has to listen. Ask him if it makes him feel uncomfortable to talk to you about it.
I think worry is okay as long as it doesn't take over your life. Some say worry shows a lack of faith. My faith is fine but there are things that worry me...cancer showing back up, is Arimidex doing more harm than good, am I getting the right care and so on. My DH said I worry too much about BC since my BS said everything looked good (I saw BS this morning for 6 mo checkup). It kind of made me mad because no one gets it...except people here.
DH reminded me again today in that not so subtle caring way that I am not taking care of myself so BC is not the problem. With that being said, I think I'll choose between getting on the treadmill or having ice cream. Decisions, decisions...
I feel ornery today, need to throw something...0 -
mema4, throw something, it does feel.good.
Happy Canada Day any fellow Canadians!
Almost 1 week out from surgery and doing really good, no pain meds, sleeping good, just cant lift
Linda
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Polly, I LIKE your suggestions and I'm going to use them if need be! Been waiting for this for quite awhile. It'd be nice to get back at him for that first crappy consult last January. Talk about ornery. Maybe I'll be throwing implants in his face if I get any lip, LOL!! Wth, they're soft enough - or if they're not, he'll wish they were, lol!
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you guys crack me up.
I am a slammer...cupboards and drawers. Luckily I don't have those soft close cupboards.....that really would be frustrating. I don't do it much anymore, but one time many years ago I slammed a cupboard door so hard that it came off its hinges. that's when I learned about epoxy...it'll fix anything.
Yes! Mary tell the jerk of a doc about Cancer. Just look at him and tell him how you think and feel. There are other docs out there.
Linda, so glad you are healing quickly. Rest up and take care.
ttyl
Eve
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LOL...and you wonder why I like to kick and punch!! It's awesome...just say'in. Happy Canada Day Linda! So glad you are feeling good. Heading out for a cortisone shot in my tailbone and then on to class (I'm okay for kicking...just not sitting, LOL).
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Glad to hear you're recovering just fine, Linda!
Eve - I had a door slamming weekend. Got mad at my DH - and SIL during her usual bragging session about how good she has it at work, bonus, vacation time, retirement funds, yada yada. I got up and swore, slammed the freezer door (nope, not loud enough), stormed off and slammed the patio door. Still not a really great effect, but I think I got the point across, lol! I think she knows that I've been going through a lot and it wasn't directed at her, but she has fair warning now that it won't take much to set me off, so watch out!
Diane - that does sound fun!
Ok....going to get my Ativan now. Yeehaw!
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Feel free to use my gloves. They are well broken in. Lol!
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ha ha! mary good for you!
In the beginning of my BC journey,( walk, run, crawl,) my SIL, who is a chaplin at a major hospital here, was complaining, again, about her $70,000 a year job and all the crap she has to put up with.....
Oh my freaking god....really? The woman is 58 and has never left home. Totally hates my FIL, her adoptive father... Makes life miserable for my MIL and FIL. I told her off. 4 years of BullShite and woe is me crap. I just let her have it. Luckily we were in a restaurant so I didn't go in full force. But man o man. getting pissed and blowing up is really not my style. but when the time comes and it is warranted...watch out!. the thing is with people like that they still don't get "it".Girlstrong talked about faith, when I am around people that have a masters degree in theology and social work and then call people of a certain color names....I just get sick inside and want to punch them...
my vent for today....but it applies to dumb, arrogant docs, and anyone who professes to tell me what I should do and how I should act :P because I will make my own decisions based upon my research and quite frankly my gut feelings concerning the question at hand.
I learned a while back that docs.and anyone else for that matter have an agenda. Not necessarily in my best interests. So I have to make sure I know what I want, but I have to be informed so I can get the best care possible and ask for what I think I need and will benefit me.
oh crap! I know I am venting and I don't know if anyone cares right now.
sorry for going on.
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I love all this spirit tonight...feels good. Slamming doors is fun...never knocked a hinge off Eve but that's pretty funny. I like that chickie, get a headband and some gloves. A__holes will know we mean business and quit telling us what we should think! You guys give me strength. Keep getting better Linda!
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Hi ladies!! Well surgery went well. The doctor said there was quite a bit of scar tissue so the procedure took longer an expected. Went in at 745 and was in recovery at 1230. She was able to get everything (uterus, cervix, ovaries, tubes). She said I should have pathology results in two weeks or so. Please, pray for no more cancer !!! I'm doing ok with the pain probably 2-3 most of the time but the nausea sucks!!!!
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Awesome to hear Mommyathome. Take Colace so easier to.poop. Also GasX keeps the gas pains not getting too bad.
I briskly opened a door when mad and put the handle into the wall. Now i slam the door closed not open lol
Linda
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LOL...the posts were funny, but I couldn't see the chick pic or the boxing gloves on my phone. You guys are a crack up! So love the vibe of today's posts. Okay, so there was some ranting by many, but it's healthy and positive. Eve - I care very deeply and agree with you that we should advocate for ourselves. You should feel free to rant...after all, you listen to the rest of us!
Sleep well, my BC tiara wearing, door slamming, punching sista's!
Diane.
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Linda- Woohoo on your recovery...even sleeping well, that's awesome!!
bc101- That pic of the chick cracked me up! It was perfect for the vibe that was on this board.
mommyathome- So glad to hear that things went well with the surgery!.. A friend told me to heat ginger ale up in a mug with a tea bag and heat it up for a minute 45 seconds for nausea. It helped me when my stomach was a bit off but it may not help it your nausea is really bad. Just hope you feel better each day and will be praying for great results!!
Ally
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Ally,
Thanks. Ya the nausea comes and goes. With movement it gets worse.
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Yes, Eve, please do not ever feel like we don't care about your rants. I always love hearing what you have to say - rants and all.
Beverly - congrats on another surgery completed! Sending positive vibes and healing light for a speedy recovery - and good test results!
Here is a message for all my surgery sisters...
~Mary
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