I'm truly sorry to hear this Kelt. I wish there was more I could say or do. I'll definitely keep you and your mom in my prayers. Hang in there.

Oh, my friend, I'm so sorry. Day at a time. All you can do is what you can do. One foot in front of the other. Repeat.

I'm here for you, pal.

Kelt....I am so sorry you are having to endure this on top of all else and am sending you & mom both hugs. I will keep you both close in my heart & wishes for a good outcome. Take care my friend!!!

It seems like I have been a caregiver since as far back as I can remember. I've cared and given care not only to both my sons, who've both had they're own sets of challenging issues, but was caregiver and chief overseer of my siblings, at such a very young age -- up until the time I just couldn't do it anymore.

This year marks another time in my life where I've got my mother who's got herself painted into a proverbial corner, she's elderly, can't take it anymore the caregiver role she's held actively all her life, both professionally as a nurse and as chief overseer of three siblings of mine who have had challenges most all their lives, much like the scenarios both my son's face, except stark racial differences in the case of my sons, rather than as not so visible in the case of my three siblings.

I hate secrets. I'm not good at keeping secrets. My mom told me something tonight and told me to not say a word...to the person, my sibling who is culpable of what she's said to me.

I guess where I'm going with this is that care giving isn't always a physical concept. That care giving roles can wander into the non-physical realm. Which is a tricky place to be, when faced with not wanting to keep secrets....which in the case of my mother, keeping secrets is valued highly. I can't keep secrets. To me, that's allowing unhealthy cycles of behaviors the latitude to become more entrenched in abuse based behaviors and in styles of communication.

I can't be a party to keeping secrets. It's not okay. To me, it's not healthy. It's a toxic part of cycles of abuse and in order to break the cycle of both abuse and it's more silent role in care giving, as it's been in roles of care giving for both my mother and I, then I have to find a way to effectively not be party to this kind of behavior, which finds a comfortable home in the way care giving has always been practiced between my mother and I and with my siblings and my sons.

I feel so incredibly stressed out. I've got my mom's dire situation on one side, my son's dire situations on another side, then there's me. My own dire situation which based in physical and mental health, my own emotional well being is at stake.

And all I can do right now, is make sure I'm taking care of me FIRST by getting enough food to eat, enough rest and deep sleep, and being as thoughtful as I can where my own sanity is at stake.

I've been shoring up my boundaries because it takes a lot of energy to make sure I give myself the level of care I deserve and need to remain healthy and cognizant of all that is before me, each day of life I am grateful to have.

I have no idea what tomorrow will bring, but today I did my very best at caring for me.

One day at a time.

Some days, it's one breath at a time.

Living moment by moment, believing in my ability to care precisely for me, is probably one of the best things I've done for myself since I came to realize how important it is for me to take care of me.

:bouquet:

Hey there, I can relate to your situation as I'm a caregiver to my spouse, plus work fulltime as a caregiver. Finding ME time can be hard! I'm on a caregiver support group online that has really helped me a lot. There are good days and bad days. Like you said, take one day at a time and some days (like today) one breath at a time, too! If we don't take care of ourselves then we will get burnt out.

My luck seems to be holding, we had moms surgical consult yesterday and the surgeon is going to pull some extra hospital time so that she can have her surgery on Monday morning. This helps me out a lot with extra travel.

For some reason I have been equating in my mind recovery from a mastectomy as being similar to top surgery. Apparently not, looks like it's going to be pretty easy for her. Then of course it's just back to hurry up and wait a few days for pathology till we figure out what's really going on.

Here's hoping for no complications…

Hi, Kelt. My understanding is the difference is that they take the lymph nodes out with a standard mastectomy. I don't understand why it would be easy?

On the other hand, in the scheme of things, top surgery isn't really bad. Depends on what you are comparing it to, of course.

You and your mom are in my thoughts (like you are every day, I am just too shitty of a friend to reach out to you. :( ). I love ya, brother.

Hey Kelt,
I'm hoping that everything turns out for the best for your mom and for her recovery. I'll keep you both in prayers as I do often. Thanks for keeping us updated.

I haven't posted in here in a while... so I thought I would give you all an update.

My stress levels are pretty high these days and on the rise.

My son lost his psychiatrist, we tried to get a new one out of town and they declined after a single consult because they felt that we were too far away to adequately manage his medications. He did make some med changes at our consult and then recommended a new local psych. The state medical denied the new medication the second month, along with all but one of his other meds... it took 3 weeks to get that straightened out... all of which he went unmedicated. We then met with the new doctor who is making yet another med change, which was almost denied again.

He is having so much trouble this year I am just at my witts end. His defiant behavior is off the charts and there is nothing I can do to get him to comply. Bribing, threatening, discussion, negotiation... none of it works. If it doesn't directly benefit him he just wont do it... and hes now too big for me to force the issue. Hes been becoming increasingly aggressive towards his sister. From pinching her butt, lifting her skirt, blocking her way so she can not leave a room... and even threatening to ruin her violin with a kitchen knife. I am so glad I made the decision for her to move to her fathers for the time being. She doesn't need to be exposed to this every single day.

The aggressive behavior has also become a problem at school. We have been in for multiple meetings over the last semester and changed his behavior plan more than once. He has stolen a teachers cell phone (he had it for 4 days before anyone knew), locked his teacher and students in the classroom with him and wouldnt let anyone in or out, and made bodily contact with a few students (shoulder shoves, pushing, etc) hard enough to hurt them...

After a lot of discussion and some serious sacrificing on the part of my family we decided to take him out of school and enroll him in an online schooling program. My mom is coming to my house during the day three days a week to run his schooling, and the other two he will stay with my brother. I will work with him on school work one day during the weekend when I am off work.

I feel exhausted. All the time... and trapped in this house.

It doesn't help that I am also dealing with some health concerns of my own that are keeping me down a lot so I cant even be up and moving around to compensate for any of this...

Anyway... I know that was kind of a rant... thats where I am right now...

It's not easy dealing with things on a daily basis, Jenn. I understand you need to talk about it. I'm so sorry that you're dealing with all this I wish there was more I could say or do for your situation. I know you must be so stressed it's not even funny. Please try to take care of YOU whenever possible because if you dlon't then your no good to anyone else. Remember, you can always come here to vent or whatever. I'll say prayers for you and your family. God Bless you Jenn.

Since we're not going to do anything reconstructive there won't be any binding post surgically, and apparently she's going to have pretty much full range of motion in her arm within a few days. Of course this all depends on how far they have to go with the lymph nodes, but it's expected to be a pretty smooth recovery. We are going to do some radioactive tags for lymph node mapping during the surgery to try and get all of the bad ones while sparing as many of the good ones as possible.

Then of course is when the fun begins. Three or four days after surgery we should get the pathology and then it's onward to oncology. Mom and I have been having some pretty good talks, (which she remembers for about an hour), about how far she wants to go with treatment. If the treatment can be handled with something like hormone blockers, a possibility, then that would be fine. If they recommend extensive or harsh chemo, she doesn't want to do it. She would want me to switch her to hospice comfort and care.

My main job at this point is to get her out of the hospital as soon as possible, it shouldn't be more than one night, and then to make sure she doesn't end up in a nursing home. After watching my father die in one of those last year, there is no way I'm going to let that happen to her.

To say I'm having a hard time with all of this would be an understatement. The "hurry up and wait" is the hardest part, there's just no way to know how this is going to go until we have the pathology report post surgically.

Surgery tomorrow morning.

<<<< Would like to crawl into a hole and pull it in over myself.

Kelt- the radioactive marking is a really great progression in this type of surgery. It certainly spares a lot of the lymph nodes, where it used to be that all would be taken out. However, the process of that surgery can create a fair amount of discomfort and decreased range of motion. Also depends on how the surgeon goes in. I don't know if your mom is having a mastectomy or lumpectomy but each would mean a different way of going about it. She will likely be given recommendations on restricted movements for a week (no raising arms over shoulder height) until a post-op check where she can be given exercises to increase range of motion and loosen up scar tissue. I hope the pathology comes back in your favor with clean lymph nodes and more.

My very best to you and your mom tomorrow and in the coming weeks.

I'll be thinking of you and your mom, my friend <bro hug>.

((((((((((((((((((((Kelt)))))))))))))))))))

You know I am with you on this...and send you user reps, but wanted to stand strong here as well.

This is no easy journey by any stretch of the imagination. The hardest part is on the caregiver...and the wait is really stressful.

The blessing is in that she can make her mind up even though she forgets after a bit. I think she is making wise decisions and you are able to support her in them.

Things will progress as they are supposed to, and I have really positive hopes for a good outcome for her. I send you energies for this journey....stay strong...and know I am always here for you....you are a wonderful

person....she must be so proud of you....hang in there my friend...blessings for mom & you...you both are in my heart & thoughts every single day...

I am happy to report that mom's surgery was quite successful. It went off without a hitch and the really great surprise was that most of the lymph nodes were already gone from her surgery 25 years ago we just didn't know it. My hope, confirmed as a possibility by the surgeon, is that that would have reduced the ability of the cancer to metastasize. It's still a waiting game for pathology and then oncologist, but at least there were no negative surprises during surgery.

After surgery? Never a dull moment.

Mom was pretty spun out with confusion afterwords, which I thought was going to be the case because she was in an unfamiliar environment with lots of things she didn't really understand. I thought we'd be OK for one night in the hospital but when I had to leave at 9 o'clock I was still afraid that she might wake up in the night and try to get out of bed to figure out where she was. I knew she wouldn't get far because her legs were tied to the bed with those things they put on to prevent blood clots . I had the staff set a bed alarm just in case so that if she tried to get out of bed and alarm would go off.

Well, she did try to get out of bed, got all tangled up in IVs and cords and things and took a fall. Fortunately she bounced instead of broke, (a small miracle given her osteoporosis), but she did manage to rip out her surgical drain. I got the call at 3:30 this morning to let me know what had happened and that while she was OKish, we would have to check in with the surgeon when he does his rounds to make sure I can still bring her home today. Like there's really any choice. What am I going to do, leave her there for another night? Have this happen again?

Obviously, I'm going to have to come up with something better for future field trips. I'm thinking the only way to handle this going forward is to get her a private room with somebody to sit up all night, probably me, to answer her questions when she wakes up so that she won't try to get answers on her own.

Oy vey!

I can go over there in a couple hours and see what's what. At least the surgery is done.

My thoughts and prayers are with you! I know how hard it is to have a loved one sick. Hang in there!

This is great news my friend...up until the fall...but also good news is no broken bones.

Those are compression hose to prevent blood clots....:).

Caring for an elder loved one is no easy feat with dementia thrown into the mix...but you are doing wonderfully well with being there for her...I am sure she appreciates you for that in her heart & is grateful for you....

Hang in there my friend....I am walking in spirit with you buddy....hugs to mom...keeping you both in thoughts & well wishes....thanks for the update....

Boy did I ever mess up tonight, Since I have been down with both my knees being so bad and my back issues as well just today I finely couldn't even stand up to fix a simple bowl of oatmeal this morning so I ended up having a couple pieces of left over fried chicken for breakfast. I tried to fix dinner and still couldn't do it with the pain I am dealing with so I called my son to bring home some kind of take out for dinner. Any way before he went to bed I ask him to make a pot of coffee being he brought a fresh can of French silk coffee.
The last I made coffee was last Sunday and haven't cleaned pot since so it really needed a washing out first. He said "why haven't you cleaned the pot out it's nasty" then proceeded to dump the entire pot upside down in the sink, I mean the whole contraption. At that point I just sizzled with my Aries temper then tore everything out of the dish washer threw it on the counter or where ever it landed then stuck the taken apart pot and all the dirty dishes in then turned it on. I have been doing the laundry, still fixing meals plus doing all else I could do to the point I couldn't do any more, I knew I was over doing it but things needed to be done. The crap about the coffee pot just hit me wrong.
My son has gone to bed before I could appologise for being stupid, so I wrote him a note saying I was sorry incase I didn't get up before he left to say before he left. I know we will get past this cause we never or rarely have something like this come up...this is his first taste of being a care giver even in the smallest way and my first ever needing anyone to be one for me, it is a hard adjustment for me cause I always have been able to do it myself.

My so is really sharp about lots of things but not at all in the kitchen, he is as lost as a goose. I had to draw a chart on how to load the dish washer, you wouldn't beleave how many ways he has loaded it and washed the dishes. I hope things get better to. T y.