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So much Stress

tllcaregiver
Posts: 10
Joined: Dec 2011

I am the primary care giver to my mom who has stage 3 throat cancer. She has done amazing through this whole thing with 6 chemo days and 30 radiation treatments. We have only 3 more to go now .

I had a bad day. My mother's been emotionally challenging for me since this whole thing began. She has terrible mood swings. She really uses me to vent on and as her daughter I sometimes find it hard to listen to. She won't give me an inch sometimes. She refused the feeding tube and does not keep up her end of taking the liquid diet supplements so she is always mal nourished. She won't take her temperature regularly like she is supposed to and she won't come and live with me so I can be a full time care giver. My days are spent driving back and fourth to the hospital which is a 2 hour trip both ways and then doing all her messages and cleaning and getting her settled in her place. I sometimes only arrive home after 8 pm where i then have to deal with my own children and house.

I have really tried to handle things in stride. I remind myself I am healthy and have no reason to complain but sometimes I feel like I am being stretched in so many directions I can't keep up.

Today, I felt like my plate was full. My mother began to complain about all the treatments and how horrible she is treated and how this might not even be worth it as there are no garantees this will even work ( even though the doctors say she is responding wonderfully) I guess I spoke to her in a way that was tougher then usual. I did not mean to. My goal was just to try to pull her mind out of the gutter , she is at the end of treatment that is going well. I just tried to be tougher in a gentle way tell her to take baby steps and not to focus on all the little things but just her health and the rest can be worked out later.

She told me I was being horrible. I did not intend to. I did not even think or realize i was. I apologized. But later found out she made calls upon her arrival to her siblings telling them how much she loved them all and cried on the phone. that made me feel even worse then I already did.

None of these people she called and cried to even help me. I do it all alone all the time and have been for 6 weeks. These last two have been two of the hardest of my life. I just don't know how to get her mind focused on the finish line here. I want so bad for her not to sit and dwell in all the things she can't solve right now and just focus on the health.
i feel so badly now . I have no rights to make her feel like that. I guess it just came out wrong.

She's a stubborn wonderful lady. I just don't know how to handle the moods she goes through. I have been taking it all in. I feel like I have been a zombie since the day she told me she has cancer. I sit in the waiting room while she is having radiation and I feel like the world is going super fast except for me. I am in slow motion.

This has been so hard. Balancing her, my own sadness , my kids and my work . I feel so pulled apart.

ldguerra's picture
ldguerra
Posts: 41
Joined: Jul 2011

Hi ttl,

I know the feeling and hon I am sure that most of us caregivers feel that way. It is overwhelming for us as caregivers especially when we have to deal with our love ones who are so difficult and stubborn. I am caregiver for my husband who is quite stubborn so I know the feeling. His mood swings would get me crazy asking for one thing and then saying he don't want it. He would be upset if the food is just one minute late on the table, and then he wouldn't eat. He would refuse meds because he says he don't need it even though it is time for him to have the meds. He would not drink the protein shakes because it made him feel too full and those are just examples of things that goes on. I know that sometimes I wanted to just shout at him and say don't you know what I all I am doing for you but somehow I just couldn't get those words out and just held it all in and then go to the bathroom and cry. Oh how glad I am I didn't, now that he is on terminal stage and that is what he keeps thanking me for, not shouting at him when he had mood swings.

I know you must be more overwhelmed having to deal with cancer, your mom attitude, your work and your kids. I know you want to be there for your mom and make sure she does everything as should be done for the betterment of her health however I this will only stress you more than necessary. Caregivers we are already stressed enough with knowing our loved ones has cancer and our feeling that we are useless around them. We feel impotent not knowing how to cure what they have and make them be better and be the way the used to be.

I know it is difficult, but sometimes we just have to let go and let them have some slack because just like us they have enough to deal with. I would suggest that you find someway to vent, like here and in chat where u can get response immediately and see that we caregivers all go through the same thing, all of us here need someone to lean on and be our rock and that is what we do here.

so hon some big big warm hugs to you and just keep your chin up you are doing the best you can and should be proud of what you are doing. You are your mom's rock even though she doesn't show it or even say so. They can be stubborn, moody, aggressive but it is how they deal with their life changing and not being the person they were.

Hugs, Hugs, and keep your chin up and just relax some. Take care

tllcaregiver
Posts: 10
Joined: Dec 2011

Thank you so much for your reply and sharing your own experiences with me. It helps to know i am not alone and sometimes there are others who are going through the same things. A lot of what you said about your husband are things my mom tends to do as well. It's definately been a challenge.
It really is a challenge to be a care giver. Like you said, we never really get a chance to digest the information we were given. In one split second we are told someone we love has cancer and its like the rest of the world, the things we loved and took for granted seem to just fade away and all we then focus on is cancer and treatments.
I am trying to just let her vent and not say anything. I truly want you to know I give my 110 percent effort to suck back what I am thinking and feeling. Sometimes it just feels like I can't do anything right. But from the stories you've shared it helps to know this seems to be difficult for many like you and I . Thank you so much for the support.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Hon, I've been in these trenches for almost three years, and it's the hardest thing I've ever done. I have driven to vacant parking lots to scream in the car, and banged on walls and it may have helped some. I love my mother, too, but she knows how to push buttons that have been gathering dust since I was twelve. When we were about where you are now, I remember sitting down and having a face to face, explaining that we HAD to get along, and that meant she had to get hold of her moods. It helped some.

My mother is dying now, and losing her mobility is really really tough and brings out her evil side. Three hours later she's crying and kissing my hand for nothing. It will all shake out just right when you know you're doing the right thing. It's the pits, but hang in there.

ldguerra's picture
ldguerra
Posts: 41
Joined: Jul 2011

Ttl I am sure that u don't give 110% because i am sure that u give 200%. It is too difficult to be caregiver and how the loved one reacts isn't easy for us to deal with. I am proud of you and you should too, just remember that you're doing all you can and the rest is out of your control. Your mom appreciate you being there for her even though she pushes your buttons. When is she is a nice and happy mood you can tell her in a nice way how she makes you feel, just try to make it sound so subtle otherwise she can feel offended. I did that with hub but carefully choosing my words and when his kids were here he told them that he was glad i was his wife because no one would have the patience i had with him. So they do notice, but probably don't know how to show us. Hugs and chin up cause you have a lot to be proud of.

Couchie
Posts: 24
Joined: Nov 2010

I'm sorry I don't have anything to say that might help. I know the feeling too though. There's a point as a care giver where you just don't feel like you have anything left to give. And it feels like that stage lasts a very long time and then one day you wake up and it's over - you suddenly find patience that you felt like you'd lost.

cosmic_me
Posts: 35
Joined: Dec 2011

I'm sending you a mental hug :) I've been in your position. My mother passed on Dec 14th and for 9 months I lived a very similar life to what you are going through. You hit it dead on the head when you say you feel like a zombie. So many have asked me how I did it and my only answer is this... I don't know how I did it. My situation was pretty complex. My mother was completely unable to move from prior health problems before being diagnosed with Cancer. I took care of every thing. Meals, house cleaning, laundry, meds, glucose testing, insulin shots, administering all pain meds. Bowl and bladder care, bedpan, diapers, bathing, feeding, turning every two hours. I swear to God I never really slept the entire 9 months. If I did it was a max of 3 hr's and that was maybe once a week. I'd take naps at one hour intervals or as I called them body rests where my body laid there while my mind wouldn't shut off with constant worry and fear. The times I' actually dreamed I'd have nightmares so I avoided sleeping too deep. If I was deep asleep and I'd be thrust awake some times I'd be so exhausted my legs would give out when I'd first stand up. I'd fake that I'd tripped on someting if my mom saw that. I always layed and slept at either the side of her bed or on the couch at the foot of her bed. I'd be up and down all day and night turning her and doing all the other care to keep her comfortable. I did all the lifting, transfering, dr visits, communication to every medical professional and what meds weren't fedex'd to the house I picked up at the Pharmacy every other day. Also threw in shopping. Going to the Dr's, the pharmacy, and shopping were my only times I'd be out and about for any type of outside human contact but I was on a ticking clock. My mother would get very scared if I was gone more then 15 minutes.

I had no assitance with day to day care. I smiled every time someone would say if I needed anything let them know. They would say they would sit with her if I needed to get away but when I went down the list of what they'd have to do while I was gone one by one they suddenly didn't have the time available to help out :) I gave up my work, my income and basically lived in a vortex of watching my sweet precious mother slowly being tortured by a disease until her last breath. I did all I could do while I felt a part of me dying with her.

I dealt with all the mood swings, night fright, personality changes as well. Yes there were days for some reason she'd just be flat out mean. I knew it was part of the process so I said nothing. I was treated so poorly I'd feel like chewed up garbage but I'd press forward. For some reason my moms perception of time was completely off. She wanted me to reach, fetch and do at least 10 things all at once and the second I'd get busy on one thing she'd tell me I was too slow. I said nothing. I simply handed over my entire soul to make sure my mother would be comfortable and as pain free as possible.

Since she has passed I've gotten a bit more sleep but it's still very hard. As I review things and still wonder how I did all that I have come to the conclusion the lack of sleep was a twisted blessing. You are so mentally tired you move on auto pilot. You do every thing you are suppose to do but your mind just doesn't have the time to over think the deep gutwrenching emotional stuff that is actually happening. It seemed though I would forget certain things so I started leaving notes to myself all over the place reminding me of what I needed to accomplish that day. Maintaining med counts was a hard task but I got pretty good at that. Had I stopped to embrace all the emotion I don't think I could have functioned and got every thing done each day because I'd just be crying which I did a lot of that in the bathroom so she couldn't see me but I'd clean up and move on from that. Be forewarned it does come back to you after they pass but I do think exhaustion is actually what got me through it. And Caffiene :)

I'll be honst I wish I would have known of this website while taking our journey into the abyss because I have noticed giving myself time to vent does help. So utilize this place as well as an outlet and please know you are not alone even though you feel so isolated to the point of feeling like you are an alien on this planet. I'm sending you and every home care provider positive energy.

cosmic_me
Posts: 35
Joined: Dec 2011

Don't know why that posted so many times.

cosmic_me
Posts: 35
Joined: Dec 2011

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