Just a long rant from a stressed & confused caregiver

[Akidenrah]

I care for my mother who has about 15 years of dialysis experience behind her and ongoing while I try to play role of caregiver and parent for her. I recently finished a semester packed with 18 hours of class while working as her provider and I just don't know what to do anymore.
I have been living with her for almost three years and my stress is now affecting me physically and emotionally, and my relationship with her is severely strained. People are always saying what a good daughter I am for taking care of my mother and going to college, but I don't feel that at all. I feel I'm failing somehow and I feel terrible for lashing out sometimes because I'm just always thinking, always mad these days it seems (sometimes I can't even pinpoint a reason) and I can't help it, which drives me crazy.

My mother, since she was diagnosed when I was 7, has always counted on people taking care of her for as long as I can remember. I know it isn't her fault, but she seems to have regressed over the years and it feels so much more like I'm caring for a younger sister than my mother. She hasn't actually been like a mother to me since about elementary school and she also leans on guilt trips sometimes when she doesn't get her way. I've been warned by my dad that when I do decide to move out, to expect things like, "You don't love me anymore" or something similar (which I've already encountered once). For years I was angry with him for giving up on her (especially when I see all those supportive spouses that did hang in there) and I never will, but it's almost unbearable when I feel so... trapped.

I've been so busy with class and taking care of her, I haven't found time to work on my stress and try to calm myself down nor would I know how. If I'm not in class, I'm at home. I have no way to get anywhere at the moment- I get rides to class. I feel trapped because I have no way out or to make this work. Everyone keeps telling me I've done enough and to let things take care of themselves. That I need to focus on me now, but I feel guilty for thinking about that. Not only that, but if I leave, she'll have to go to a nursing home or move in with her mother, who is the one helping us out the most and I don't want to give her anymore to handle. She comes over often enough and this whole thing has strained her marriage.

I avoid leaving her alone when I can after a wake-up call about two years ago when I left her alone for a weekend to visit my dad out of town and came back to find she'd had a seizure all weekend. She was in the hospital for two weeks and had to be fed by hand, and didn't have any idea who I was.

I'm feeling at a complete loss, getting unhelpful advice from my dad's side of the family and advice from Mom's side that doesn't help much either. I need a little advice from someone who knows more about a caregiver's role and how I can work things out and try to take more care of myself.

It's an ongoing thing since I was small and though it became normal after awhile, now that the responsibility is mostly mine, with help from my grandmother, I don't know how to continue doing this. I love her and I don't want to feel angry toward her for something she can't help because I feel terrible and guilty for feeling this way... I don't want to abandon her, but I have no life of my own and now at age 21, I thought I would be living my own life by now, at least a little. Isn't that selfish?   

[ashwee]

Hey,

For starters it's not selfish at all!!!
if your not healthy, its not doing either of you any good.
i'm a caregiver too, of my mum, who was diagnosed earlier this year but has had health problems since i can remember. i work full time and take care of my mum every other minute of the day. my story is about 99% the same, so i definitely understand, and know what your going through.
Personally i've experienced the guilt trips as well, also the running away because she didn't want to go to hospital.
Its tough. and some days i want to scream, and cry, and hide away.
i understand.
Recently i've had to tell her i was taking one weekend off. after some winging. i got one afternoon. but it helped.
I havent been able to find a solution to every thing just yet... but even having that one afternoon released a little pressure. i'm actually going to my doc's this week to see what they can suggest. i'll let you know how it goes, and what they say.

good luck, and remember your not alone... i fell ya...

[Poppylicious]

Wow.  Firstly, you are an amazing person for being so committed to both your mother and to your studies.  But perhaps now is the time to start focusing on yourself; you're physically and emotionally stressed (and no doubt exhausted, perhaps depressed) and this won't be doing your mental/physical health any favours.  It's unsurprising that your relationship with your mum is strained at the moment.

She is not solely *your* responsibility.  You can't put your life on hold because of the guilt trips, or the worry that not being there will result in negative things happening.  You must not think that you're selfish, or feel guilty, or be afraid to ask for help.

You say that you have to get lifts everywhere ... do you live in the middle of nowhere? You really need to find some time for you, some Me-Time.  Even if it's one afternoon a week, where you can do what you want (even if it's just a long brisk walk to clear your head, but not studying or working or doing tasks for family.) Perhaps you can gradually start staying away from home for longer; an occasional evening, a night at a friend's house, building up to a weekend away at your dad's. Does she need a carer with her at all times or is she capable of looking after herself?  Has she just become dependent on others? Is there any way that family and friends can help her become more independent? 

By taking more control of your own life, you won't be abandoning her.  You'll become mentally healthier and more able to cope with all the stresses and trials that life as a caregiver throws at you. 

What do you hope to achieve in life?  What are your goals and aspirations?  Where do you want to be in five years time?  How are you going to get there? How can other people help you with this? (Have you written it all down? No? Write it all down! Have something tangible in front of you that you can focus on!)

I realise I've thrown a lot of questions into the mix here, but perhaps it's time to start focusing more on them (yourself) and less on your mum.  You will never stop loving her or wanting the best for her, and you will no doubt always be there when she needs you, but this doesn't have to be at the expense of your life, your mother/daughter relationship or your sanity.

And finally, please come back here often, in both the good times and those times when you just want to rant and grumble and scream.  Sometimes just the process of ranting can be one of the most cathartic things ever and really help you get everything into perspective!

*huggles*

[MooseMom]

Oh my...you are overwhelmed and need practical help. 

First, I agree with what Poppy has said about guilt.  Guilt is incredibly corrosive, and even worse, it can lead you into making very bad, impractical decisions.  I don't think you are angry with your mother, rather, you are angry at the situation as a whole.  Life can be vastly unfair, and you're right in the middle of such injustice.

I don't know the details of your situation, so perhaps part of or even all I say is irrelevant.  If so, please just ignore me.  If your mother has been on dialysis for so long, surely there is a social worker attached to her case?  There are teams of people out there whose JOB it is to support people in your position...they get paid for helping you construct some sort of support network.  You've said it yourself...you need advice from someone who knows how to support caregivers, so I would suggest you start there.  If your mother has a doctor she sees regularly, or if she goes to a particular clinic or hospital regularly, perhaps you can start by asking that person/those people about support.

It's not a matter of whether or not you are "selfish".  What matters is that your mother gets the care she needs, and you are getting to the point where you can no longer provide everything she needs.  As our population ages, and as there is less and less money to go around, more and more people find themselves in exactly your situation and need the same type of help that you do.

Keep us posted on your progress.  If you keep on your present path, very soon you will be no help to anyone.  You are very wise to recognize the problem and to want to change things so that all of you can have a good life.

[boswife]

Well, i can say you sure have a full load and you really need to  find something someway to relieve some of it befor you explode.  I will add my story in short.  Im WAY older than you but in my early 50's ( now im bumpin 60) my hubby and i had a granny flat built on our property with all the necessities for handycap and all, so as we could take care of my mom.  (My sister had done her 'time' and almost lost her own life trying to do it, and now it was my turn. ) Well, it lasted only a year and i'll tell you why.  All of the same issues you are dealing with.  My mom was a precious soul but for what ever it is that happens to aging, or illness or??  things arent as you hope they would be.  I'll just say that with all our efforts, things still became very hurtful.  We added caregivers to give her company and that worked for a while but then she pushed that and her dear lady had to back off as well,  HARD!!  Then, sort of a God send, (though it sounds awful) mom slid onto the floor and we couldnt get her up. Fire department came and because her blood pressure was a bit off, we decided to go to ER.  From there, to a sort of re-hab or skilled nursing facility.  Boy, did i get the evel darts shot at me at first and then she LOVED it and i got the darts when i brought her home.  All she could say was TAKE ME BACK there!!  lol..... so, i began to look for a place and took her there for a visit and she agreed, and then when i moved her there, well, once again darts were thrown and i was sick, ill with greif and behond what i could figure anymore.  I ended up on disablility myself with a breakdown, and mom, well when i went to her new home on the sly, i saw that indeed she was very happy and now having the time of her life.  Still, when she would catch me spying, she would turn her happy face into a frown and give me heck.. It was awful..  It took about 2 weeks of this and she settled in EVEN when i was there, and enjoyed all the activities they had available.  It was a good stage of life for her, and she told me one day she wished she had come there sooner so she would have kept heself in better shape to keep up with the others....  Anyway, im not suggesting you let her go to a new home, BUT!!!!! in your time off...HA!!  you may want to see what is available out there.  It may surprise you and you may become her angel by doing so.  It may not be easy at first, but it saved my and my dear (once again)moms relationship..  She became the loving mother i knew and I became once again, her daughter that cared enough to do this *for* her.  I wish you well.  Keep posting,

and!!  i just remembered that one of our best buddies at the center just checked into an assisted living place.  I was delighted because i knew the benefits (people have the wrong empressions of these places) of it for him.  He is so encreadably happy he did it.  He has a nice home he shared with his daughter but it became hard to deal with the little ones being so active and all.  It's his house that he opened to them, but these things sometimes are harder than you emagine.  Anyway, as of 2 months now, he is thrilled with his new place, gets a ride to and from there to dialysis, and is pleased he made the move.  Just another success story :-)

[monrein]

I just wanted to say that I commend you for all you've done for your Mom for so long and for being as understanding of her situation as you have been.  Now that that's out of the way...I also want to say that you really must NOT sacrifice your life for her and indeed it sounds as if your childhood was already given up to an illness that isn't yours.  There is a difference between support, caring, love, help and all the other nice things that we do out of duty and compassion and self sacrifice in which your needs never really get met.  As others have said, guilt is insidious and relentless...it mustn't win.  You are far too young to be living a life of such drudgery and I don't believe that your Mom would really want that for you either if all were well with her.  You, like every one, deserves at 21 to be carving out the best life you can for yourself and that should be your priority in my opinion.  I'm not saying abandon your Mom, but you should NOT be in this position of primary caregiver and I hope that other adults in your life and hers can help you sort this thing out.  Also please consult a social worker or other professional to find resources and I hope you have one that isn't useless!  If other living arrangements are the only way out for you then please consider them...you can still love and support your Mom while living for you. 
If anything I've said sounds harsh, that's not my intention...just disregard it if it feels like I don't understand...but I certainly don't see you as selfish, i think you need to be MORE selfish and therefore nicer to yourself and to your needs.
 

[del]

You are NOT selfish!!  You are in the stage of your life when you need to be planning your future.  Try to find some support system to help you.  Take some time to yourself to do what you want to do. Your mom will probably lay the guilt trip on you but don't let it affect you. As long as she is getting the care she needs that is all that is necessary.  If you keep this up you are not going to be able to look after her anyway!!!   We went through this last year with hubby's mom (she's not on dialysis) but she does have dementia.  She had to be put in a nursing home because it was impossible for us to look after her anymore. Hubby came very close to having a breakdown over it.  I was so stressed last spring that I ended up having to take a long time off work.  It is a terrible feeling to be so stressed. Hubby's sister basically made both of us feel guilty for what we had to do but she couldn't look after her either. Basically didn't even come to visit when her mother lived with us.  Get some support before you get really stressed!!

[looneytunes]

Hey Akidenrah...I don't have much to add and agree totally with what others have said.  You are to be admired for hanging in there as long as you have.  Selfish....NEVER!  Other than that, I'm sending you a cyber-hug.