Caregivers and Stress

[Kätzchen]

Thought I would share a tiny bit more about my role as a caregiver to not only my mother, but as a caregiver to my youngest son.

Last summer, my youngest son lived on his own, worked a relentless schedule at work (upwards of more than 60 hrs/wk), then moved back home last October and fell apart mentally and emotionally. For the past three months, I have observed him having lucid moments to sheer irrationality, bordering what I think has spiraled into a strange case of schizophrenia.

My youngest son spends hours sleeping or will wander off for unexplainable walks to unknown locations. Only to come back and melt into his bed and have conversations with people you cannot see.

He's been in and out of the hospital. No insurance, not able to work, can't get him to go to a social service agency to get approved for a state medical card or be evaluated properly by medical personnel.

There are days I feel I can't take another single incident or event --- with either my son or my mother (she is and can be very needy).

But I keep watch over my son and look for ways I can lead him to safety, when he seems to be lucid/rational.

My heart goes out to those of us who are caring for people, near and dear to us.

[Martina]

I am truly terrified as I enter this phase. I am afraid I am not going to be good at caretaking, that I will be impatient or bring her down with my sadness and fear.

I also hate to see her struggle with anything really. This is my mother I am talking about. I can't say the words, but this is a disease where there is not a lot of hope. We do hope. But it's hard. I mean it's hard. It's weird sitting in a neuro unit listening to others and wishing your mom had been shot in the head or had had a stroke. Or had heart disease or anything else almost. She's always been healthy. Always afraid of illness too. And then this. She is not prepared for it.

I just want to find the thing in the universe that I can blame for this and beat it to a bloody pulp. If we were wealthy, we could not buy our way out of this. We are going to a world famous cancer center in a couple of weeks. My mom overheard a nurse talking about it and referred to us as richy riches. We're not. Far from it. We have insurance and the sense to go to a world famous cancer center. I mean, shit, who would not try to go to one?

But no one has a handle on this. No one. A future generation may not face this terrifying prospect, but my mom will.

[TruTexan]

My heart goes out to you, your mom and your family, Martina. I pray for your mom to have a successful journey fighting this disease. I know all too well the toll cancer can take on a family, my uncle had brain cancer. I wish you strength and patience in your time of need and for your mom I wish her courage, strength, willpower, and wellness.

[princessbelle]

Originally Posted by Martina

I am truly terrified as I enter this phase. I am afraid I am not going to be good at caretaking, that I will be impatient or bring her down with my sadness and fear.

I also hate to see her struggle with anything really. This is my mother I am talking about. I can't say the words, but this is a disease where there is not a lot of hope. We do hope. But it's hard. I mean it's hard. It's weird sitting in a neuro unit listening to others and wishing your mom had been shot in the head or had had a stroke. Or had heart disease or anything else almost. She's always been healthy. Always afraid of illness too. And then this. She is not prepared for it.

I just want to find the thing in the universe that I can blame for this and beat it to a bloody pulp. If we were wealthy, we could not buy our way out of this. We are going to a world famous cancer center in a couple of weeks. My mom overheard a nurse talking about it and referred to us as richy riches. We're not. Far from it. We have insurance and the sense to go to a world famous cancer center. I mean, shit, who would not try to go to one?

But no one has a handle on this. No one. A future generation may not face this terrifying prospect, but my mom will.

My heart goes out to you and yours.

It's like being on the edge of a cliff and having no idea if the other side is a thousand mile drop or a step and even more terrifying is knowing there is no safety net, no harness to hold you up. I get it. We get it. Hang in there. One day at a time. One hour, one minute at a time. That is all you can do.

[Kelt]

I actually took the day off today.

It was hard as things kept popping into my head but I just jotted them onto a list for tomorrow. I slept in, errands, shopping, gym, library, cleaned the house, and enjoyed a river walk.

I did pick up a couple of books at the library researched the day before but didn't open them. Now I'm watching a movie.

MUCH. Needed.

[afrcnqueen]

The latest update with mom:

She went back into the hospital on Tuesday last week with a MRSA infection on the toe that was amputated.
She was in more pain than before.
While in isolation this week and fighting off the infection. She decided to have the surgeon take the entire foot about 1/3 of the way down from the knee. This way she has a better chance of wearing a prosthetic after.
Will the foot amputation work and she will be on the mend and pain free? Can't say. Don't really know. she also has the other foot to deal with in the near future. She may end up amputating that one as well.

In the meantime, I need to think about making the house accessible for her to get around in. Things such as wheel chair ramp; stair lift for the internal of the house; or possibly turning the basement into a 'studio' type living area for her.

I'm numb to be honest. I'm also overwhelmed. But I must do what needs to be done for her.

[TruTexan]

It's days and evenings like this one I just want to pull my fucking hair out and say.....don't call me bitching cause something is broke on your car, your brother says nothing is wrong and don't change out the part, and yoU KNOW it's broken and had my sister order the part for you, then tell ME I don't know what the fuck I"m talking about nor do I KNow what I know in how to replace the damned thing for free..............???? REALLY MOM???? I was a fucking mechanic !! REALLY?????????? ARE YOU going to tell me AGAIN HOW STUPID I AM and I DON"T KNOW WHAT THE FUCK I"M DOING??????????? OH MY FUCKING GAAWD!!! I Just want to pull my fucking hair out now!

[JustLovelyJenn]

Today was such a hard day. I am so emotionally spent. Its hard to keep it together by the end of the day when things go this way.

I know... I'm a mom, kids have bad days... I get it. But I'm not just a mom... I'm an AUTISTIC MOM. That means I'm part mom, part caregiver, part behavior specialist, part psychologist, part special education teacher, part mediator, part enforcer...

Today I took my kids to swim at the YMCA, like we do every Friday. My son broke his goggles recently. He doesn't have a new pair yet. Well, today the Y didn't have a loaner pair. So he stood and waited for someone to return a pair, he tried to fix a broken pair, he hovered by the stairs watching for another pair to appear, and finally... he started harassing the kids who got to them first to find out when they would be done with them so he could have them. We talked about it, I reminded him that Easter was soon and he got all his summer toys in his basket so he might get a pair then. I gave directions for him to do something else and finally I gave an ultimatum that if he couldn't play and stop bothering people he would have to leave. He refused. He was totally fixated on the goggles and nothing else existed. Finally after almost 20 minutes of trying to get him back on track I told him we needed to go change and grandma would come and get him. That he could try again on Wednesday. He started SCREAMING... he screamed and threw a tantrum loud enough that the Y attendant came and shut the door to the family room. I know I had other parents looking at us and wondering why I was letting my child behave this way. It took an addition 20 minutes of him screaming and crying and pulling at me and refusing... to get him out of the building and into his grandmothers waiting van (my daughter was still inside playing). That last few steps out the door as I am standing behind him pushing him forward a gentleman opened the door and held it for me with an understanding look. I almost broke down in tears on the spot.

He hasn't had meltdowns like this in a long time. I know things have been harder for him lately, and we are dealing with med changes again. But its physically and emotionally exhausting to have to calmly try and convince someone who is being so aggressive to do what you need them to do. Especially because he's not a little boy any more. I can't move him, or restrain him on my own. If he doesn't go willingly, I'm stuck. He's always sorry after, he just can't control himself in that moment.

I really need a break.

[Cailin]

Flomax is a prescription that basically helps someone urinate.. and in some cases, urinate frequently.

My client has a prescription and he quite often makes funny quips about Flomax

One day he said (in his South African accent, which adds to the humor for me) "I thought of a new curse," he said. "Oh yea, what's that?". He goes "May you ever have to take Flomax"

So today, city workers were outside cause a major raucous (he likes his quiet.. he calls the police on barking dogs). He says "When they get off work, they should all have to take 20 Flomax's each"

smh.

[Kelt]

We'll see how this works posting from my phone, please forgive any errors.

Today I pulled the plug on my father for the second time. As I mentioned in a previous post, a couple of months ago when all of this started I signed him off to hospice and had his IV removed, and then he went and woke up.

It's been two horrible months in a nursing home. He is basically starving himself, and now he is at a state where he just sort of fades in and out of consciousness. A little while back I put him in hospice care and three days ago I took him off of all medications other than pain and anxiety. (It's not like he needs his blood pressure meds now). About a week and a half ago, he was having a hard time breathing but his blood oxygen was still staying high enough. At the time I had to make the decision to give him a little extra oxygen just as a comfort measure, not to be sustaining, so that he wouldn't have to work so hard. Now that some time has gone by, and he hasn't had even fluids for four days I've decided to remove the oxygen just in case it is now acting as an artificial support.

I feel like I live in a barbaric country, there is no way anyone could ever consider this humane, he looks like something straight out of a concentration camp. This is tearing my mother to pieces, and it's not doing me any good either. If this is how nature takes it's course with a stroke victim, shouldn't we be humane enough with all of our medical advances to help them just a little at the end? Rhetorical question of course.

I would, (and could), treat a dog better.

(If anyone is wondering, all of the attorneys carefully crafted words can't help in this situation, the paperwork is in order to prevent this from happening, yet it is.)

I had planned to drive home last Saturday and I am getting to the point where I really will not be able to stay here much past tomorrow as I have kept pushing off my own obligations at home. Today was especially fun, I got to take my mother to the funeral home so that we could fill out all of the paperwork and pay for the things we are going to have done in advance since she can't deal with it by herself if for some reason I cannot be here long enough.

Mother is a whole other story entirely, and I won't go into it today. Suffice to say, my ideas of what kind of help she needs going forward are changing the more time I spend with her. I'm trying not to kill her about nine times a day, but it just isn't her fault. She really is that confused.

I'm afraid this is a jumbled mess, but trying to do this on the phone isn't working. I'll wait until I get home to post more. Thanks for listening.

[Kätzchen]

Sometimes, when life is terribly difficult (like last week when my son decided he didn't need his arm or hand anymore and he ended up having emergency surgery - he goes back for more surgery tomorrow), I count myself super lucky that I live where hundred year old Larch stand tall in dense groves of pine.

Spending time among the trees and waterfalls helps in transcending painful life events and helps me so much.



Sending lots of peaceful energy to everyone, tonight.

[Kelt]

It worked. He's free. Exhale.

[TruTexan]

I swear, the last few days in a row there is NO Pleasing my mother and she remains upset over things that I have nothing to do with, like her car having issues and she won't let ME fix it, and takes it to a mechanic whom can't get said parts at the local parts stores, I can order them and replace them myself, but NOOOOOOOOOOO. And so she bitches about it more and takes all her crap anger out on me. And my younger sister is in the worst mood eva, she didn't want that phone call about the part she ordered that is WRONG, now she's gotta eat that cost and buy another one, but she won't let me ORDER THE PARTS MYSELF, so she's in a piss pooor mood and feeling the strains financially herself and may be losing her job (i hope not) and is feeling like she's the only one doing stuff for our mom, when in fact she is financially but not with everything else that comes along with caregiving stress(see she lives in Tennessee, not Texas). Our older sister needs to get off her ass and start helping financially(years over due on this fact). I would but I can't, I live on disability small check, so I do the other things like fix shit, take mom to the doctor, handle any paperwork and insurance shit that goes awry, deals with SSI and social security, gets her help financially with her electric bill, and fixes the lawnmower and what she will allow me to repair on the car. MY GOD I"m so sick of my mother's attitude that it sucks being around her. I know I shouldn't feel this way, but man, I just feel like I'm done when she's like this and I want to move and move on with my own life, find a partner that I can love and loves me in return, etc and move on with my own damn life. I don't have a life of my own . UGH
I have a migrane today over mom's and my sisters issues upsetting MY issues I deal with. Dammnit, I just got back into town and been running my ass off for the last several days in a row, since last Friday, and tomorrow I have to go see a neurosurgeon for my back, then when that's done, come back and take mom to go pick up her car, which couldn't be fixed and that she has to spend money on to put it all back together. UGH UGH MF UGH.


DO I have permission to stick my fucking head in a hole in the dirt and have someone bury me ? UGH

[TruTexan]

After having flown to TN with my mom and staying there a week at my younger sister's home. Mom got into a small tiff with my sister in which I had to set them both down and tell them I can't take the stress and neither can they. I made them hash out what was going on to try to resolve it.

Ok, now we're( mom and I) on the plane this past Monday and mom is fine, we land and wait for my uncle and she's fine. We get into the car and start driving. A little while passes and mom just explodes on me like fireworks went off and starts this yelling screaming bull shit, blaming me, saying ugly abusive things to me and one of them was that I never help her. I tried my hardest to ignore her and asked her to please just STOP, then my anxiety and ptsd went through the roof because she just kept on and on and on. Nagging and bitching at me and carrying on like some lunatic. My uncle is driving and we are distracted by the heavy rain falling and all the yelling in the car. I'm trying to focus on watching for our signs for turns to get to the freeway to take us home. He stops the car at a gas station and goes inside to the bathroom. I'm in the car with my mom and she's yelling and screaming at me even more and then from the back seat she reaches forward balls up her fist and starts hitting me in my right shoulder that's between the seat and car window and starts threatening me shaking her fist at me. I got out of the car, pulled open the back door and told her that if she didnt' quit hitting me I was going to call the cops and have her arrested for assault then get her evaluated for help because I can't take anymore shit. I've been helping my mom since my step father passsed away in Jan. 2010 and I've been having to put up with her abuse and treatment for 5 1/2yrs now. I got back into the front seat, buckled up and lost my control, yelled at her and told her I"M FUCKING DONE. AND I"M NOT TAKING HER TO THE DOCTOR TUESDAY. She begins to tell me OH YES YOU ARE. I said MOM, What part of DONE do you NOT UNDERSTAND? I'm NOT TAKING YOU ANYWHERE ANYMORE and she better call my uncle SAmmy to take her to the doctor. I told her I didn't want any further contact from her, not to call me later and apologize because her apologies are worthless and meaningless because they mean nothing without her change in her behaviour. That I didn't want to hear from her again and not to call me for anything. I'm so overwhelmed with anxiety and depression and ptsd rearing it's ugly head I'm losing my coping skills again. I didn't sleep at all after I got home that night. I had night terrors one on top of another and would wake up in fear and sweating. I had to call my case manager at the Andrews Center where my therapist works and where my doctor is to see if there is ANY WAY POSSIBLE that they can find a way for me to continue seeing my therapist and use my medicare insurance that will pay for more therapy. The center only allows so many sessions and I'm out of sessions. I was crying on the phone with my case manager practically begging her for her help. I just don't know how to walk away without a support system emotionally and mentally. I need my therapists help to get through this and the guilt that I feel inside. I called my younger sister and told her what happened and that I just couldn't do it anymore that it's affecting me too much to continue helping our mom. I then asked my sister if she had any understanding of why mom chooses to do this shit to only me and no one else, my sister had no answer and could only say I"m sorry, so I told her I was DONE taking care of mom, that I needed to take care of Me because I can't deal with mom anymore. It's just too much, and all she could do was be quite on the phone, listen, and in a soft voice to me said OK, OK.
Man, I have so much stuff on my own plate that is overwhelming me and now this shit with my mom. I feel like I'm such a bad person for telling mom that I can't do it anymore because of her behavior. I live in a one horse town and there is only 2 people here that I consider friends in my all adult seniour citizens apt complex. I have only 1 that will talk to me about this stuff but has nothing really to say about it except that she's sorry I"m going through all this with my mom. I Need Emotional support from friends and family and I just don't have that. I am reaching out to those of you caregivers to see if you all can help give me this. I need all the emotional support I can get. I'm all alone here and no one in my family understands. I called my grandmother and a dear friend from online and both tell me to take care of myself and leave my mom alone and don't talk to her if she calls. I know I have to take care of me because if I don't and my depression gets any worse, I'll be so messed up and end up having a nervous breakdown. Which I cannot stop if it happens. All I can do is ask for emotional support from online friends and my therapist and case manager. I'm also going to go through back surgery on June 18th and I don't need anymore stress in my life. I need calm and peace to be able to go through recovery until my back is healed. So, please , if you can, send me messages and talk with me even if it's just talking about the weather. I would appreciate it.
Thanks in advance,
B.

[Kelt]

Well folks, after three days of mother being bat-shit crazy, I've got her moved.

She's got her things, she's in a place I consider to be much safer, and she has little to worry about. There is the potential for a good life for her there if she chooses to avail herself of all it has to offer.

I've got it set up pretty much hotel style where she just signs for things and it all gets put on one monthly statement, one copy to me ,one copy to her finance boys who pay it after I approve. She will never have to see it. So as long as she is on campus I don't have to worry about her losing a checkbook or weird amounts of cash. They drive her around to appointments and whatever else she wants, so that gets her off the road too.

I also got in touch with the corp my father used to work for and talked to them about the problem with no piece of paper being safe around her and was trying to work it out where I would get all the paperwork at my home and if something needed to be signed, I could send it to my notary and have them take just that one thing to her home and handle it the rest of the way for me. No dice from the pension folks.

I'm not and don't want to be full POA unless she is incapacitated medically, it's a dignity thing, I don't want to have her declared incompetent until I really have to. So they (Boeing) have a nifty little work around where I can do just a corporate POA so that I control all of the things around pensions, medical, etc for that company only. She still gets to be "independent", but I can take care of quite a few of the issues for her.

I got that all officially signed and sent off yesterday, huge sigh of relief for me.

So now of course her car is officially dead, and the AC which I tested fine the day before I last left has also bitten the dust. It's pretty hot here and guess who is using the house as temp lodging until it sells?

Slowly, very slowly, things are starting to fit into place. Two more days to get her unpacked and take care of a couple other meetings and I get to drive home Saturday (and listen to another audio book, life saver), then I get my own life for a couple of weeks which I hope will involve watching my new seedlings take off in the garden!

[Kelt]

Hey Tex, check your PM.

[TruTexan]

Hey Kelt, thanks.

Also, I'm glad you've gotten everything set up for your mom, it's been an ongoing process I'm sure. I hope she enjoys her stay there and finds a lot of new friends she can talk to , gather with, and play games, etc.
Here's to our back surgeries buddy. I wish you well in yours if you choose to do it. Me, I'm going through with mine, it's finalized for the 18th June, a day surgery if all goes well from what the nurse told me. I see the doc 15th June and he'll talk to me about it more then and explain it all to me.


I wish all the care givers stress free times to come.

[TruTexan]

It's going to be an ongoing emotional struggle for me to make final decisions about what to do about my mom. A part of me wants to completely walk away because she's toxic to me and the guilt lies in me for thinking about leaving her behind because she's my mom and the only parent I have left that's living, even though she treats me badly.
I hate being in this position, it's tearing me up inside.

[TruTexan]

My younger sister that lives in TN that financially takes care of my mom, finally got a hold of her via phone and she talked to mom about her behavior towards me. She told mom under no circumstances should she ever lay hands on me again. That if she's that angry, she needs to stop yelling and wait for a time when she's alone to do all that screaming and yelling, etc. And to stop pushing my buttons and that I wouldn't respond to her and feed into her bullshit.
She also told mom that she wouldn't have taken her to the doctor the next day either, after her behavior like that. That I had the right to say NO and not do it. That I had the right to tell her I wasn't going to help her anymore if she kept acting like this, that it's a bad relationship she's building with someone that is her child and that loves her enough to stay here near her and give up my life plans to take care of her when she needs my help. What a way to treat me like that. And that she was so wrong for acting and behaving like that and that she knows if the roles were that she was here that mom would act the same way towards her.
And told mom to call me and apologize because she was very wrong for doing things like that all the time and it needed to stop and she needed to go see someone because she's very bitter and angry about her life and that her children have to help her make it through every month.

Anyways, mom called and I made her wait to talk to me for 3 more days, after a full 7 days of not speaking to her already. She apologized and told me she called and got medicaid to help her get to her dr. appts. every time she needs to go and that it was free. I was relieved because she always has a habit of trapping me in the car while driving and starts yelling and screaming and then it turns into a full blown fight with words between us and my ptsd and anxiety runs amock when she does that, WHILE I'M DRIVING.
Thank goodness I don't have to drive her now. Whewww what a damn relief.

I'm still not sure if I'm going to move away or not and fully walk away. I need to talk to my therapist and my case manager to make sure I make sound decisions because I don't trust my own decision making process when I"m stressed the hell out like I've been this past week and ongoing.

Thanks for everyone's pm's and words of encouragement and support on my rep comments as well. I appreciate every one of them. It's nice to know I'm not alone in this mess and that there's people in the world that actually care about what I"m going through. So Thank you all again so much from the bottom of my heart.

[Kelt]

Originally Posted by Kelt

Well folks, after three days of mother being bat-shit crazy, I've got her moved.

She's got her things, she's in a place I consider to be much safer, and she has little to worry about. There is the potential for a good life for her there if she chooses to avail herself of all it has to offer.

I've got it set up pretty much hotel style where she just signs for things and it all gets put on one monthly statement, one copy to me ,one copy to her finance boys who pay it after I approve. She will never have to see it. So as long as she is on campus I don't have to worry about her losing a checkbook or weird amounts of cash. They drive her around to appointments and whatever else she wants, so that gets her off the road too.

I also got in touch with the corp my father used to work for and talked to them about the problem with no piece of paper being safe around her and was trying to work it out where I would get all the paperwork at my home and if something needed to be signed, I could send it to my notary and have them take just that one thing to her home and handle it the rest of the way for me. No dice from the pension folks.

I'm not and don't want to be full POA unless she is incapacitated medically, it's a dignity thing, I don't want to have her declared incompetent until I really have to. So they (Boeing) have a nifty little work around where I can do just a corporate POA so that I control all of the things around pensions, medical, etc for that company only. She still gets to be "independent", but I can take care of quite a few of the issues for her.

I got that all officially signed and sent off yesterday, huge sigh of relief for me.

So now of course her car is officially dead, and the AC which I tested fine the day before I last left has also bitten the dust. It's pretty hot here and guess who is using the house as temp lodging until it sells?

Slowly, very slowly, things are starting to fit into place. Two more days to get her unpacked and take care of a couple other meetings and I get to drive home Saturday (and listen to another audio book, life saver), then I get my own life for a couple of weeks which I hope will involve watching my new seedlings take off in the garden!

Eight days.

I got a call today from one of the campus ministers (she's an atheist, that's a whole other story) who met her today while she was out walking on the grounds. She got turned around and was trying to orient herself by local businesses, which she does well, and did exactly what I told her to do: when you pass someone while exploring smile and say hello, they may be nice or grumpy or you could make a new friend. Hey, it works for me...

Anyway, they struck up a conversation and whatever transpired led him to look up her contact number and give me a call. I think it'll be alright, I explained about her husband of 60 years recently dying and that she just moved in a week ago and was under a lot of stress.... I appreciate that he was concerned and maybe simply taking an interest, but I can't have this go sideways, not yet.

ETA: Three hours later when I talked to her on the phone and asked how her daily walk had gone she had no recall of meeting anyone. In two or three days she'll think of it, maybe.

I really thought this was under control and I could go back to portions of my life for a while. I'm going over week after this but it was to be the last interval visit for a while so I can get some things done at home while she adapts. I am calling her everyday for now for a while and she gets that if I just keep a regular visiting pattern she will not grow into her new life and will just wait for the next time I show up. She also knows and is seemingly okay with the fact that at some point very soon I have to do a medical thing that will possibly clip my wings for several months.

I am so worried that they will ask her to leave because of cognition/memory problems. I am still working with her Dr to look for other causes beyond the normal altzheimers screenings, she just had another test today, for carotid artery blockage. I meet with her Dr next week to go over results but I don't think that's it. I'll ask for a referral to a neurologist but don't know what else to do. I couldn't even get a tour of the really good memory care facility without a diagnosis.

Grief is hitting her really hard now that so many of the other distractions have been removed. I don't think there is anything I can do besides let some time pass and just be available to talk to if she wants. The minister was very nice and is also a grief counselor so he may check in on her a bit. I just really need this situation to hold together for awhile, since I am pursuing this medically and had her checked before we moved her in, I think it's safe, but what next?