I can't take much more of this

[janehill]

At least if this was me, I could look forward to some peace in death.

My patience is just done. Mom is not making sense now. (though CT and MRI of brain are clean) She forgets when to take meds, twists instructions and is just very difficult to deal with on a rational level, rather it's just much worse since the LC.

People say things all the time like: I pray my mom can beat this thing, I hope she lives another twenty years, I want her to fight hard and live on. And I get it, I really do. My mother's death will shatter me on such a fundamental level that I'm smart enough to know may leave me in agony for years. I'm an only child, to boot, so my mother's death literally leaves me with no immediate family (my dad died when I was a teenager and I barely knew him).

But I don't feel like most people do. She lives over an hour from me and I talk with her at least twice a day. My mom tells me every single ache, pain, disappointment, sadness, etc. (and always has - she has never seen a shred of good in life), I call the doctors, make appointments, use almost 90% of my vacation time to help her, take her to doctors, do her groceries, set up the home health care aides (5 days/week for 2 hours each visit), schedule her medications on a printed calendar and then have to fight with her about why she neglected to take the anti-nausea meds and then calls me in the process of throwing up (yes, in the middle of it) telling me she feels terrible (umm....no kidding!). Okay, in case it's not clear, I'm doing it ALL. There is NO ONE to share this burden unless I put her into a nursing home and not only will she be miserable and call me twenty times a day with crying complaints but I will have to do all of the things they don't do either - so I'm not leaps and bounds better off.

The lung irritation causes her to cough constantly so it's already a challenge to talk with her and help her. But worse still, she doesn't hear well and yells into the phone while interrupting me CONSTANTLY as I'm trying to help her with instruction and therefore hears 10% of what I've said. Then gets angry and yells, "you told me to take the anti-nausea medication only if I felt sick." So I have to scream back "I HAVE NEVER EVER EVER EVER EVER SAID THAT - I HAVE INSISTED THAT YOU TAKE IT TWICE A DAY NO MATTER WHAT, SO THAT YOU DO NOT WAIT UNTIL YOU'RE THROWING UP TO TAKE IT." It only gets uglier from there. Guess where I spent 12 hours on Saturday? At my mom's house building a decking structure to mount onto her tub so she could sit on something stable for the health care aide to help her bathe. And I make about ten calls a day during work hours trying to manage things as well.

My mother's existence is pure hell to us both and I can't pretend otherwise. There is NO FIXING this thing.

My mother will die from this disease - maybe next week, maybe in two years. I will feel excruciating agony when it happens - no matter how soon or how much later. The ONLY difference is that another two years of the stress, anxiety and daily responsibilities will cause me more depression and personal illness. I have had heart palpitations and fluttering since last summer - no doubt brought on by stress.

I feel as though I could have a heart attack and die. I told my mother as much over the weekend (after her continual "this hurts, that hurts, I don't like this, etc. - because I try to fix it all and IT'S NEVER EVER EVER ENOUGH!). You could hire 3 health aides round-the-clock and she'd complain that one is ugly and it distracts her. You could fix her a perfect meal and she'd say it has gravy on it she doesn't like - you remove the gravy and she says it's too dry. I AM NOT exaggerating. This is what I have lived with since birth. I told her on Saturday that she needs to try to back off because I feel like I could reall have a heart attack and you know what she said, which was no surprise to me. She said, "God forbid, then I would have to go into a nursing home for sure." That's right. Not, God forbid, you're so young and have so much life to live and you deserve decades of health and happiness for being such an outstanding daughter who has done so much more than she even could to take care of me. No, because it's not about anyone but my mother.

Enough is enough. I am a human being. I deserve to be happy. I deserved to go away to college and not had to stay close to mom because of her relentless needs due to her handicap.

My mom has long said "you should have a child so there's someone to take care of you when you're old."

How dare anyone think an autonomous human being is here to be enslaved by them. We all deserve happiness and independence.

So please understand if I am clueless how folks can actually pray to extend the lives of helpless parents unless, of course, they live clear across country and don't deal with 90% of the caregiving to begin with.

I hope no one ever has to deal with a situation such as mine, truly.

[RandyW]

Vent away it is probably the best thing to do at this moment anmd get it all out. I am like Katie and Live near my folks. I can offer an Ear to listen with and a Shoulder to cry on and a Prayer for some peace and tranquility. You have to take care of yourself as well as mom. If you keep all the stress bottled up it will drive you nuts. Not good thing. Is there anyone closer that could help out in SOME situations, like a friend or possibly a caretaker besides Home health Care. This is just a thought to try and make thnigs a little saner for YOU AND MOM!! My parents have a young lady around the corner who comes over once a week to help around the house whenI can not be there for a few extra Bucks a week. Just a thought again though. Prayers For you and Mom anmd the Family of course.

[janehill]

Thanks Katie and Randy,

You guys don't know how nice it is to read such understanding words - especially with how utterly rageful I'm well aware that I am. It really does help.

I'll tell you the underlying problem here. My mother really does need 24 hour/day care but would NEVER accept a nursing home. And putting her in one would not only cause me far more agony than I'm already in, but she would be even more miserable (which even I find hard to imagine).

Honestly, the distance is a big issue but FAR from the least of it. Even if she lived next door, I would have to still do EVERYTHING. Even the people I know who are caregivers to parents seem always to have another parent or step-parent living with them and a couple of siblings to share in something. It's really quite unique to be completely alone, without options and with a parent who is NEVER grateful for what they have. I always used to say, My mom lives life not by "what have you done for me lately" but by "I don't care what you've done for me lately, what are you going to do for me tomorrow?" You can do the impossible (and I do - countless times a week) and the next day it's all forgotten and a dozen other needs pop up.

If living with such disability causes you to need 100 things done each day, someone has to do them. And if they do 98, the next day there's 102 to do. Okay, here's my favorite metaphor: I'm a desperate mouse running on the wheel as fast as I can, faster and faster and faster and then I get off the wheel and I've made no progress - just kept the wheel moving.

Ugh! I'm so not nice to be around today.

By the way, I do have a home health care aide that comes Monday-Friday (2 hours each visit) and I have used more money of my own than you guys would even believe (probably over $500 this month and the month isn't over) to fund a bunch of things for her.

It's just too much. I saw more REALITY in life by the age of 10 than most people see before their 70s and that's a very truthful statement.

Last year during mom's nursing/rehab home stint I arrived to find someone probably close to or over 100 years old (I don't know if it was a man or a woman - completely androgenous at that point). The person was lying in a reclining type chair near the nurses station in 100% la-la land yelling "NURSE, NURSE, NURSE, NURSE, NURSE" with 2 second pauses in between. This person was in the same place every single day for about 12 hours - clearly not rational or even "there." This is life?

And that's where I am with mom. Her symptoms are ENDLESS (lifelong diarreah, vomiting, nausea, dizziness, back pain, esophageal discomfort, dry cracking skin, weakness, fatigue, hearing loss, vision problems, can't walk, little use of one arm zero use in other, headaches, burning allergies that cause blood to come from her mouth, limbs that alternate between being very cold to burning hot to swollen). I try to map out the meds to relieve as many as I can and she forgets to take the meds then says she doesn't remember where she put the med calendar then insists I told her something I didn't, then drops the phone while I'm talking, we get disconnected, doesn't hook it up right and busy signal for hours, calls me later to blast me, "You don't care if I'm dead or alive here" and denies the phone was not hooked up. HONESTLY, this is the deal 28 out of 30 days a month. The other 2-3 days are just miserable but not so much I'm on the ledge.

Goodness. I've gotten to learn one thing for sure. Being a sole caregiver is a VERY short term ability unless you're Mother Teresa (and even then.....).

Hey, I promise, that's the end of my rant. I'm going to put my head down and pray right now that I can just make it through today and I'll worry about tomorrow then.

Thanks again.

[sharyn]

I can't relate at all to what you have written - I was not my Dads primary caregiver, but I was there whenever things went the least bit "awry". He appreciated all that I did and told me so every day, I guess that is the big difference here.

My heart is almost breaking for you because you should not feel this angry at your mom, not now. I am not saying you don't have a right too... I am just saying it is too bad with numbered days ahead that you can't find some middle ground so you two could get along better. I will pray for you both as I think she is as unhappy and stressed as you are.

[Bev'sSister]

Janehill,

I was not going to respond to this, because I didn't want to come off as being un-caring. I think of my daughters and if they ever had to care for me in that situation. I would hope they would be better at it than what you describe, and if not, then I would want to go to a nursing home. There are many on this board who would love to have their Moms back to care for..no matter what the situation was. Please step back and think about what your mother has been through all of her life. She is 72 years old and seems to have suffered a great deal. It is only natural that she forgets her medicine sometimes..or can't remember what the exact instructions are. SHE IS 72 YEARS OLD.

I hope you can get help with this situation. Maybe you could see a doctor about your stress and he could prescribe something for you to help you cope better.

[janehill]

Bobby,

Since you felt so comfortable to speak your mind to me, I'll respond in kind.

Clearly you couldn't begin to scratch the surface of what I've lived. I was born to a handicapped woman and I have taken adult responsibilities since I was in kindergarten. Perhaps I am selfish for thinking that at 40, I would like to think about me. I might like to move to another state or take my vacation for me and not hoard my days (as I have for over a decade) so I can use them to care for my mom. I might like to have a child that I could never have because I am already spread so thinly that it would be humanly impossible to do more.

Self-righteousness is always so curious to me. Because the most critical people (as you've been) never seem to have been in a position to know what they're talking about. I sincerely doubt you (or most people) could handle the enormous daily responsibilities and stressors involved with caring for an immobile parent on their own. Not sure you understand what ON MY OWN means but I would thank you to interpret that literally.

And I truly resent the suggestion that I need drug therapy to deal with this. This is not me having trouble coping with "every day life," this is me having a LOT of trouble coping with a parent who is extremely needy and who I have single-handedly cared for in bad times and worse.

Ironically, if your daughters - combined - did for you half of what I've done on my own mother, you'd be one blessed parent. So let's see how they do before you bash me.

You might want to walk a mile in my shoes next time.

[Bev'sSister]

Janehill,

Just to let you know, I have raised my 2 daughters single handedly for over 17 years since the death of their father. I have no doubts about being able to depend on them to take take of me if I need it. Afterall, I have taken care of them. We talk about this a lot.

I am currently taking care of my fiancee' who had a massive stroke and is paralyzed completely on his left side. I feed him, I change his diapers, I bathe him, and I cry everynight, because I know I will never be able to leave him. I get very angry sometimes, but I don't blame him. He would never tell you I have ever said or done anything to hurt his feelings. He didn't plan this.

You may resent the suggestion that you try drug therapy if you like, but I stand by it.

[Nick C]

I remember when Mom was diagnosed, I was worried that, although the desire would be there to care for her, that I would not have the stamina to do it.

You've exhibited a life time of stamina. This is probably so hard as you've done this for so long and managed what others probably could never have managed, and now, the unthinkable...it actually got worse.

I didn't live your life, but I had the "fear" that I couldn't do what you've been doing all your life. So although I have no personal experience, I kind of get it.

I remember how insistent mom got toward the end about still driving and going to work (which was the topic of my first and only thread as a caregiver). She was making no sense, she could hardly keep her (beautiful) eyes open, and yet she didn't want me having to drive her to appts and she wanted to go to work...she was very irrational. And I remember not being able to deal with it. My rope shortened quickly...and mom was only dx a month, and was really only on a downhill slide for 3 days.

Moral of the story, no one has your experience...but I could see the emotions you are having.

[mamasbabygirl]

I wonder if there are any respite services available in your area, either through an agency on aging or medicaid (not sure of your mom's financial and insurance issues). All of us caregivers know that we can't take care of anyone else if we don't care for ourselves. Sounds like you need a good break, maybe to regroup and then continue on. I'm sure the last thing you want to do is start making phone calls, but I am betting there should be some kind of service in your community that may be able to help. I was a caregiver to my mom with lots of support and a current caregiver to MIL with no support, so I get this from both ends. I'l try to help if you want me to.

[janehill]

Guys, thanks for all of the supportive and understanding posts.

That last mean-spirited post is EXACTLY why people aren't honest. It's EXACTLY why they don't talk things through and get off their chests what they need to. It's EXACTLY why people go off the deep end - the minute they rightfully vent - some self-righteous individual who has NEVER been even remotely in their shoes puts even more guilt and expectations on them. Hey, that gorilla on your back needs a buddy and they toss another one on. Thanks, really!

Yes, it's EVIL to hope that I don't spend the next 40 years with this level of caregiving to anyone. I'm such a bad person!

[peacelover]

Wow,

I wish that I could come over to our place and help out-

I am so sorry you are shouldering all of this and am sending you prayers...

blessings

melissa

[fillise]

((((Jane))))

I think this disease tests us all--whether we are the patient or the caregiver. Jane, I wonder, if because of your mother's illness you feel more trapped than normal or more guilty for feeling trapped. It's understandable. The situation is what it is, both past and present. Just from the short time I've been on the board it seems that even people who have great relationships with their families get tested when the disease makes the pain or disorientation so great that they no longer seem themselves. None of us are walking in your shoes, but know that we are here for you--if nothing more than to vent and release some steam.

((((more hugs))))

[Heather_T]

I think I can understand your feelings a little. I don't think I would feel that way with my mother but my husband is like this with his mother. He loves her a lot but she is never happy and is always sick or hurting or can not see anything but reads the newpaper everyday from front to back. Don't feel guilty!!!! It is very hard. No one should judge you for having these feeling because they have not lived your life or know your mother. Stay strong!!!

[Snowflake]

I would think the "walk a mile" comment could go for any of us. I take extreme exception to someone posting that stage IV lung cancer is far better than dealing with a demanding mother.

You've been dealing with this woman your entire life. If you're done with it, do something about it - put her in a home if it's too much for you. If you aren't going to put her in a home and continue with the stressful situation, talk to a doctor and get some medical help for yourself to help you get through it. Don't toss out a "never" on that, MANY of us here have worked through rough patches with the wonder of modern chemistry.

Cripes, it's not like someone told you to smoke some pot and mellow out!

My family has experienced reaching the end of the capability of caring for someone and sadly put the person in a home. If the patient being on their own is a danger to themself and/or others, they should be put somewhere safe. It's the responsible thing to do.

Draw your line, state your limits, and follow through. Without limits, there is no sanity.

...and you may want to think before telling me to walk a mile in your shoes, mine aren't the spiffiest pair here and I just may be willing to trade.

[raneyf]

I don't really want to fight with anyone here, and I know you're having a bad day. But I just have to say, don't be cavelier about rather having stage 4 lung cancer. I would give anything - seriously anything - to have your problems and not be dealing with this disease.

So I know the gist of your post is that you're overwhelmed and I'm really sorry for that. It sounds like you've had a hard life with your mom - makes me hope my kids lives turn out o.k. somehow. Best of luck to you both.

Raney

[Bev'sSister]

I really meant no harm with my earlier posts. I just really feel sorry for your Mom. By me being a mother, I can bet you that somewhere inside her, she has a lot of guilt for putting you in the situation that you are in. Your private message to me was really out of line and uncalled for. I do think you need something to deal with the anger that you have. If not drugs, then maybe something in the line of therapy.

My sister has small cell extensive lung cancer. I am not the primary care giver, but I certainly help out as much as possible. I just took offense at your comment that you would rather have lung cancer than to take care of your Mom.

[beat it]

I came to this board tonight for help, searching for answers, comfort in knowing others are traveling with us in our cancer journey.

I leave this post feeling worse.

Loved ones are dying from a horrible disease. Each one of us has better things to be doing then bickering like children.

Beat it!!

[Suzie Q]

Unfortunately, as we age and/or become ill, our negative personality traits become amplified. So you have to face the reality that your mother will not become a positive person. You will never get accolades for being a devoted daughter from her.

You can, however, get a counselor who can help you figure out how you can respond to her without getting into a cycle of negatives. Clearly, you need an outlet for your frustration, and it is imperative that you tend to this or you will end up like a great number of caregivers - with severe health issues of your own and/or a shortened lifespan.

I don't particularlu care for your choice of topic title, but I also know that you are venting, and sometimes that can result in saying or writing things that are hurtful. Trust me, you do not want to be the person with stage IV cancer, no matter what type. Nevertheless, I can overlook it for now.

Lori made a very good suggestion. You should check into the gerontology services in your mom's area. Often, they can provide a few hours of home or health help per week at a low or no cost; that would keep you from shelling out so much of your own money. Plus, she's disabled. Is she entitled to more services at Medicare or Medicaid expense? What about assisted living - not the same as nursing home, but maybe if she had some companionship, she wouldn't call you with every complaint. She's bored and lonely.

Anyway, I hope you get some assistance. If you don't, the bitterness will eat you alive...

~Karen

[missyk]

Jane...

As someone going through something very similar (but not exactly) to what you're going through, I sympathize with your situation. My mom has become irrational and paranoid as the disease progression picks up (we're near the end) and we've all become irritable and crabby. I had it out with my sister's boyfriend, my brother and sister got involved, and all of it on Mom's front porch where she could see that we were fighting.

Now, as far as irrational...that's not exactly a new thing for Mom! LOL I joked that day that everyone was crabbing that "irrational behavior runs in this family!" and I really meant it. I remember growing up and not knowing WHAT was going to set her off on a rampage. That has not changed a bit now. We still walk on eggshells around her...but now we do it around eachother, too.

I'm glad you came here to vent off the pressure. I've used this board the same way many times to a lesser degree...my rages are generally internalized more and that's not the best thing in the world, for sure!

I'm sending lots of prayers your way since I can't do anything else for you. But know that there are times, even in my particular situation, when I find myself almost hoping that this is the last irrational behavior we'll have to deal with and she (and we) can be at peace.

Much love...

[Shelley (MLC)]

Jane, first of all I'd like to say how badly I feel for you. Caring for another person for 30 years is an incredible feat. This would be difficult enough if the person was appreciative once in awhile, but this is obviously not the case with your mom. My dad had MS for 15 years. My mom cared for him at home with very little outside support. It was a ton of work for her (I was 12 when he was diagnosed) and I certainly didn't have to do a great deal. In any case, he never complained and was definitely easy to be around. I'm not sure how mom would have done it if he had acted like your mom. I do know people like you are describing your mom to be and it is emotionally and physically draining to be the only caregiver. That said, I'm not sure I have any great answers for you. You need some kind of break/respite from being the only person your mom turns to. After 30 years of you being at her beck and call, she is certainly not going to change now. She cannot see what she has done to you over the years, so only you can try and do something. Definitely check into any other outside support you might be able to get. Perhaps there's a senior services in your area that sends people out to visit. If you can find a couselor or someone to "vent" to, that would probably help some. They may be able to give you some guidelines to help with your mom. Most of the posts I seem to read here (including my own) talk about parents quite different than your mom. Unfortunately, you were given quite a load to carry at a very early age. No 10 year old should have to do that. Good luck with everything. Try and find someone to talk to...perhaps a minister, priest etc. They will let you vent and hopefully have some insight and helpful suggestions. Shelley

[crystleshoe]

I dont think you are a bad person. I think you are overwhelmed and tired and stressed out. My mom was stolen from me 3 months ago and it is like a stab in the heart to hear someone say they would rather their mother dead than alive. I drove 1 hour almost every day to take care of her when my dad was at work and I would gladly do it all over again to still have her with me. It seems like you have been dealing with a lot of stuff in your life so maybe you could get into some kind of therapy to help you work things out. Check into the elder services in your are to find out if you can get some more help so that you could maybe get some time off to work things out in your head. I hope that you can find some help and that you dont let her mean spirit and bitterness rub off on you.

[janehill]

First of all, I want to sincerely apologize for anyone I may have hurt for saying LC would be better for me to have. Yes, I said that out of hurt and desperation. And, truthfully, there have been MANY times that I truly have wanted this to all end one way or the other because I WILL NEVER abandon my mother or put her into a home which would completely destroy her.

To project out for another few years of this, I just can't. I really can't.

I actually called my aunt this evening and asked if I could buy her a ticket to come up from Florida for a while and at least provide my mom some company - so she can complain to my aunt some of the time and give some of the negativity her way. My aunt, who has always been the most kind, wonderful and gentle soul said "I'm coming because I love you and I want to help you but I can't deal with your mother for more than a week; she is so full of anger and negativity that I leave feeling anxious and depressed." But I'll take what I can get - so I pick her up on Saturday.

At least some good may come out of this.

[crystleshoe]

I am so glad you have help on the way. Maybe she can come up with some ideas as to how to deal with your mom. Anger and negativity just suck the life and soul out of you( and it contagious) so watch out for that.

[janehill]

Okay, I'm going to say this AGAIN because it really bears repeating: I am SO SORRY for that stupid and very insensitive headline. I don't know what the heck I was thinking. I was trying, very stupidly, to say I'd rather trade places with mom - because I can't take this anymore and phrased it ridiculously.

Please believe that I would NEVER intentionally hurt a single soul on this board (or anywhere for that matter). I will be much more careful in the future.

The stuff about not being able to do this much longer, that's unfortunately true. I love my mother very much and often don't even understand how (it's been a way difficult journey) but my commitment to her is steel - to my own detriment.

Cheryl, the comment about negativity sucking the life and soul out of you is so true. Thank you for reminding me of that. I have always tried to be so careful not to let mom leave me with that too.

Good night everyone.

[Debi]

Nothing to add that hasn't already been said. Just wanted to let you know that if you regret an insensitive headline, I believe you can edit your post and remove it.