Caregivers and Stress

[Kelt]

Originally Posted by Kelt

Things have actually been going along okay for a few months now. Mom really likes the place she is living and the people there. I'm relived to know that she has a car and driver (so she's off the road) is eating well, and has social support.

I've hired a couple of periodic "helpers" for things that her lack of short term memory impacts, and that is going well; also we are figuring out how to have a relationship with each other.

I am getting her caught up on deferred maintenance with all the medical folks and part of that was a mammogram that she'd forgotten about for four years. That led to them wanting more images because of tissue changes. No surprise, she's 84 after all but they wanted to be careful because she had breast cancer about 25 years ago.

Well, this morning they called to say they want a biopsy too so I set it up. I told Mom it was probably just old scar tissue or something so that she won't worry too much until we know what is what, but between you and I; I really hope it isn't back. This is a family that doesn't question that we die of cancer, just which variety.

2015 already had way too many "events", neither she nor I need to have anymore for a while.

I hope she's okay, we'll know more in a few days...

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

[TruTexan]

Originally Posted by Kelt

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

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.

[DapperButch]

Originally Posted by Kelt

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

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.

[clay]

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!!!

Originally Posted by Kelt

And the hits just keep on coming....

My mother has two tumors, both malignant, grade 3. The "cancer navigator" (team coordinator) just told me I WILL be there for a surgical meeting on the 21st.

I presume surgery in the next week during which I'm also scheduled for jury duty in my own state.

Obviously I will be there for whatever she needs. I just hope to find the reserves within myself that I thought were all used up to be at my best for her.

I'm still doing the paperwork on my fathers death as executor, the estate tax return is due this Friday, the nine month mark.

I just got her back after 30 years, I can't lose her now.

[Kätzchen]

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.

[Gayandgray]

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.

[Kelt]

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…

[DapperButch]

Originally Posted by Kelt

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.

[Kelt]

Originally Posted by DapperButch

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.

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.

[TruTexan]

Originally Posted by Kelt

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…

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.

[JustLovelyJenn]

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...