Alone in the world - and no one cares

[marys.rose]

i was the primary caregiver for my mum who had a terrifying neurodegenerative disease for 5 years, 1 week. Her death was very distressing - she knew she was dying and struggled for hours with laboured and shallow breathing before she was forced to give up the fight.

 

Every 3 months or so, mum would lose some function - use of her arms, then she was in a wheelchair, then her speak became slurry, then her ankles went flaccid, her neck dropped. In the end she was basically a quadriplegic at 55 years old.

 

I spent the last 5 years grieving for my mum, her losses, and now here I am, without her and I feel utterly alone in the world.

 

No one cares that I've lost her, not really, no one cares that i feel weak and vulnerable. Other peoples' expectations of me are really getting me down -- they expect me to spring up with a smile on my face. I have barely the energy to wash my teeth. I feel people talking about me, judging me -- I don't trust anyone. THey have easy lives, good lives -- what did my beautiful mum do to deserve this death???

 

I have lost my mother, my other, my security blanket, my lovely, beautiful mother. No one cares. They still ridicule; gossip; demand; expect. I lose my temper -- they all start a text conversation about how crazy and bad tempered I am? Of course I'm angry, my beautiful mother is dead.

 

I'm so loney. I miss her so much. 5 years of looking after her - the first 2.5 i did all her personal care myself until she became so complex needs, two nurses needed to be employed.... even then, I lifted her, put her in her chairs, took her on daytrips, valued her opinion right to the end. 

 

 I rarely left her side, and the only times I did go away were purely so that I could come back again. Never left her in hospital when she was admitted for emergencies - fought with nurses to allow me to stay by her side and wait when they wanted to throw me off the ward. Never put her in respite care. When she died, in was in a bed that I bought her, in her own wee room, not a horrible hospital bed in a horrible hospital. I couldn't even left her leave to go to the funeral home. I washed and dressed her myself at home, I couldn't bare the thought of someone else touching her. She had suffered enough indignity

 

 

I love you mum! LOVE you. Just one more hug, One more kiss, I wish you would wrap me up with a cotton blanket, put your arms around me kiss me like a child, and allow me to fall asleep in your arms like a little girl, one last time. 

[Heartlight]

Oh my dear Mary's Rose, I am so very sorry for your terrible, terrible loss.  It is so very clear how much you loved your mother that I can't even imagine what you are going through

 

I know you're not looking for someone to tell you what to do or how to feel, I know that you know how hard this is and how you can only be and feel what you're being and feeling.

 

But I do want to tell you something that I experienced when reading about you taking care of your beautiful mother.

 

I was feeling, very clearly, that the space you gave your mother in your heart and life and soul, you gave to ensure she had the very best in this life that she could possibly have.  I was feeling that if you were given the choice, at the beginning of her illness, where someone said to you: you are going to feel the most excruciating pain that you have ever and will ever feel in this lifetime, but your mother will pass on with the undying knowledge that she was loved; you would have consciously chosen this pain that you're feeling now rather than not have been there for her and lessen your pain.

 

Your mother had the blessing that not many people have, the full and complete understanding of your love for her.

 

And the pain that you are feeling now is still a testament to that love.

 

Don't give up.  Don't listen to those around you.  It doesn't matter that they don't care, what matters is that your mother cared and she got an amazing gift of your love and your life and that is a beautiful, beautiful thing to have given her.  Hold onto that when you are feeling your most desperate towards the outside world.

 

This isn't going to be easy so please, please be gentle with yourself.  Loss is always hard and when we have lived immersed in another person's priorities for as long as you have, it will be difficult to start to find yourself in all the sorrow.

 

But please don't give up.  Allow yourself to take it little bits at a time.

 

You have suffered a great loss, and the pain you feel was necessary to ensure the level of comfort that you brought your beautiful mother.  Many people on this forum care that you did this for your mother and can understand the level of pain you must be feeling for her being gone from your side now.

 

Please, please, be gentle with yourself.  Allow yourself to curl up and feel her arms around you whenever you need to.

 

<3

[Josh]

Most people would not be as devoted and caring as you were when it came to taking care of your mother. By the same token, even fewer people would be able to go through all of that without wavering, having doubts or regrets, or just wanting to take a break. You took care of your mother consistently for years, and the people around you who don't seem to understand really do expect you to jump up and start running around and singing in meadows. They most likely think that you would have already made peace with her fate (and I'm sure you did a long time ago, but that doesn't make her passing any easier) and expect you to feel relief now that you can live your own life.

 

And that's the thing, for the past five years, you haven't been living your own life, not really. You've been taking care of her, and living for her. You've spent so much time in that world, devoting all your time and energy to taking care of her and being with her that you're going to feel lost for a while. You're going to have to relearn how to live for yourself. To want things, to waste time, to have fun and goof off. All I can really say here is that you're going to struggle without her until you figure out what you want to do for you, not for anyone else. It's going to still hurt and you'll always have old habits/traditions that you may have done with her that you'll keep trying to do without her, but filling in that time with something new is going to help you feel less lost in the world.

 

Ah, and everyone wishes for more time, especially when they lose someone they care about. But I hope you understand that considering how much you were there for your mother, she definitely knew how much you cared for her and loved her, and I'm sure even though she was going through her own personal hell (as were you, honestly) she wouldn't have traded that time she had with you, while suffering, for any other time without you.

[Blackrock]

So sorry for all the pain and sufferings. Every mom loves her kid and she knows you love her and care for her the most. She would not want u to be unhappy and feel alone. She's always with you and were here to support u too. Ignore those crazy people bc they're so selfish. Have happy memory and treasure the ones you love. Take care

Sent from my iPhone using Tapatalk

[MissuDad]

Hi Marys.rose,

 

I´m really sorry for your loss. You´ve been an exceptional daughter and human being, you´ve been through some of the worst experiences one can go through, so it´s only natural you feel alone. One can only understand what we go through after walking a mile on our shoes, so try to pay no attention to the noise of those people (easier said than done). Surround yourself with people who can understand what you´re going through, it will be a hard journey and you´ll need all the support you can find.

 

Don´t be too hard on yourself, take all the time you need to try and find yourself again, we will be here for you.

 

A big hug

[jjl]

I'm so sorry. You were so dedicated to your mother. I know it's difficult to be around people who haven't experienced this profound pain. How can they understand? They're right here on the forum, you need to focus on you. Take care of yourself like you did your beautiful mother. I don't know you, but I care for you. I hope you find your own peace at your own pace. I lost my mom and I feel like I'm losing relationships left and right because I'm an emotional mess. The emotional rollercoaster is part of the process. It's been about three months and I'm only now starting to seek out help though I notice my little emotional fortitude is starting to crack. I realized my mom was a tough cookie, I'm a tough cookie, I gotta get through this, but on my terms. You take care of yourself. F*** everyone else (sorry I'm from New York!). You take care of you. You are also beautiful. You are also important.

[LadyV]

I am so very sorry for your loss. When you put all that love, heart and soul into caring for someone, and then they are gone.....it can leave such a huge hole. You begin to question your whole purpose of being in the now. It's like loosing a limb and having others

expect you to just carry on.

We do care, and I'm very sorry for your loss.