An update... and a plea

[Akidenrah]

Apologies in advance for the long story...

I started my membership to this site as a stressed out 21 year-old caregiver with nowhere to turn.
My mother was a dialysis patient living with end stage kidney failure and she had been sick for as long as I could remember. She lost both kidneys in 1997 and had a failed transplant in '06. I had always had at least a small responsibility in her care when I was younger, be it helping with housework or playing a part with the home dialysis process when I was old enough to fully understand what it was for. I lived several years without her- middle through high school- when she was transferred to the care of a nursing home, until taking up full responsibility shortly after graduating high school and before taking on college- afterwards, I juggled a home healthcare job and classes until graduation.
During that time, I forgot about this site. Now I wish I had stayed around and gained some advice, but I wound up in the position many caretakers try to avoid. I didn't care much for myself, I was always tired after spending nights in the hospital or up consoling my mom, and I wound up stressed, angry, and depressed all in one go. Her care was my sole concern and I worried that something would happen while I wasn't around. Due to the stress, I lost a deep passion I had in art-which I had gone to school for- because I just didn't have the motivation or energy to be creative. I had other things to take care of.
About two years ago, some bad situations led to an opportunity to get my own apartment. My mother's care fell to her mother who had been helping me in every way she could until then. I forced myself to step back, but I fell back too far. I was still constantly worried, but once we were no longer living together, I could seldom bring myself to see her. By this time, she was steadily declining and was confined to a wheelchair.
I was told more than once that this was my break. I could start my own life, but I had burnt out so completely, I didn't even know how to start. And I don't think I ever figured it out.
Last year, she passed a week before my birthday. As expected as it was, it was so very unexpected. This was the strongest woman I have ever known. She grew depressed and often spoke of what she viewed as her own weakness, but she always pulled through. Every surgery, every complication- she was an amazing fighter.
Almost exactly a year before, around the same days even, we had a scare. She had a bad seizure and fell into a short coma. Family came from out of town and she wasn't expected to make it- the doctors were certain she wouldn't- but like always, she came through and went home a week later.
This time though, she was expected to pull through. On the 23rd, we were making preparations for her to go to a nursing home for a few weeks for rehab. The next morning I received a call from my sister letting me know she was unresponsive and they were considering hospice care. That afternoon at the hospital, as the family gathered to discuss her future, her body made the decision for us. I say "her body" because I know she wasn't ready. We had even asked, while she was a little coherent, if she was ready to stop fighting. She gave a resounding "nope" for all to hear. An hour later she was gone.

This month I'll be enduring her first anniversary, having very little recollection of the last year. 17 years of worry and an overwhelming fear of what could happen have all turned to numbness. I let my life revolve around her and now I don't know how to truly step back and let it all go. I no longer worry, have nothing to worry about. But the sadness, the anger (at myself), the guilt... it's all still there. I think about what else I could have done, I think about our fights, I think about shirking her plea for me to visit 2 days before she died, when she was feeling better.

I think about these things... and it prevents sleep, concentration, motivation. I know it all must sound ridiculous, but I hope I'm not alone. I don't know what I expect from writing out all this, just giving an update and maybe looking for some advice on dealing with the aftermath.

[nursey66]

That's a lot to go through and a long time to deal with hard issues. Could you have your Primary recommend some sort of counseling to help you ? Sometimes it just helps to talk it out with someone.

[Jean]

Yes, by all means, get some counseling. You have been thru quite a few years of ups and downs, and pain and trauma. No wonder you cant concentrate. Do it just for yourself. Please.

[Poppylicious]

I don't like to dispense any advice because I'm rubbish at knowing what to say in these situations. However ...  Counselling may help (it may not) but it's worth giving it a go if you want to just talk to someone neutral, get the thoughts out of your head and learn ways in which to deal with them.  Talking to other family members about how you really feel may help too.  A year is not long ... I can't imagine losing my mum, but I can begin to imagine all the feelings that it will provoke.

You've spent so much time caring for your mum that you've got to learn to live (and care) for you now.  Can you reawaken your passion for art (if you haven't already tried to)? I imagine that might be a way of releasing your emotions. I'm not arty but I do like to write ... perhaps writing everything down about how you really feel (nobody else has to read it!) will give you some form of peace.  It can also put things into perspective sometimes, which can be a big help if you're a worrier and tend to go over everything, all the what ifs and could haves (like me).

Give yourself space and time to heal.  It's not ridiculous to go through what you're experiencing. And if you need to talk, we're here for you.

*huggles*

[PrimeTimer]

I was dealing with my mother's illness and hospitalization just as my husband began dialysis last year. And then we had to delay our training for home-hemo because of my mother's illness and then, death. It's been non-stop, go, go, go stress and worry and sadness since then. I have days when I cry over missing my mother and cry over my husband's health and cry over our finances and then the fact that I can't stay on-top of getting chores done like I should because I'm my husband's carepartner for home-hemo. I feel completely wiped out. I think I have felt every possible emotion a person could ever feel. I'm grieving the loss of my mother, a brother deployed in the Middle East, not having time to spend with my stepfather or aunt and uncle but also, I'm grieving the loss of the life my husband and I had before dialysis entered our lives. No motivation to start a new hobby, with what energy? With what money? With what time?? No motivation to do anything other than....dialysis. But boy, a nice quiet long walk thru the park to do bird watching with sack lunches would be beautiful! Waking up on a weekend and going out the door to do whatever came to mind would be nice. Heck, just having the time and energy would be great! How do we make that happen again for us??? How do sick poor people get out and enjoy things these days??

[obsidianom]

I was dealing with my mother's illness and hospitalization just as my husband began dialysis last year. And then we had to delay our training for home-hemo because of my mother's illness and then, death. It's been non-stop, go, go, go stress and worry and sadness since then. I have days when I cry over missing my mother and cry over my husband's health and cry over our finances and then the fact that I can't stay on-top of getting chores done like I should because I'm my husband's carepartner for home-hemo. I feel completely wiped out. I think I have felt every possible emotion a person could ever feel. I'm grieving the loss of my mother, a brother deployed in the Middle East, not having time to spend with my stepfather or aunt and uncle but also, I'm grieving the loss of the life my husband and I had before dialysis entered our lives. No motivation to start a new hobby, with what energy? With what money? With what time?? No motivation to do anything other than....dialysis. But boy, a nice quiet long walk thru the park to do bird watching with sack lunches would be beautiful! Waking up on a weekend and going out the door to do whatever came to mind would be nice. Heck, just having the time and energy would be great! How do we make that happen again for us??? How do sick poor people get out and enjoy things these days??

I am with you on all you wrote. It is a hard but worthwhile ride.
I too struggle with trying to do everything and have some time for fun.
I always remember that I am saving a life(my wifes) each time I do her dialysis. There is no finer action a person can undertake. That helps.
Hang in there. It actually does get easier after a while. More routine.

[Michael Murphy]

You never really recover from the loss of a close relative .  In time however you gain acceptance.  Second guessing your choices doesn't help.  The thing to remover is that you were there to help her.   The worse part of having to fight for your life is to do it alone. You supported your mom. She did not go gently into the night,  in that fight there is a lesson to be learned. In time you will stop remembering the pain and begin to recall the love and joy of helping a loved one in there final struggler

[PrimeTimer]

Akidenrah: your "17 years of worry and an overwhelming fear of what could happen" really hit home with me. I've had well-over 20 years of it...with a brief couple of somewhat carefree years before the next big wave hit and I am not in the best health/shape myself. I hope at some point tho, you will see the opportunity you have and "get back on the horse and ride". As for myself, just like obsidianom said, things get easier after awhile and become more routine. That is perhaps part of my problem. I am a creature of habit, I like routine and when my routine is broken, I feel out of sorts. I've had to start my life over and/or fit in others so many times now, it ain't even funny. I don't doubt that people who know me are saying "Damn! That woman has been thru A LOT!" I am now hoping to find a way to actually accept and be comfortable, if not a little relaxed in this "not-so-comfortable" life my husband and I have. I am trying to learn to "let go" of some worries and I sure hope you will do the same!

Came back to add: "Dang! I wish Xanax was non-addictive!" I need to go be around someone with some infectious laughter!

[Rerun]

It is always hard to lose your mother.  So you are not alone.  Do not feel guilty.  You were there for her.  She knew you were.  She would want you to be happy now and run with your life.  Make good wholesome choices.  Go back to your art.  Ask God for help.  Seek some counselling.  Be well.

That is what she would want for you.