Closer to the Edge of Us

[Charizomai]

Hello dear Friends,

It has been some time since I could come here and talk openly. I have locked the pain inside me and my own silence seems to match my mom's loss of words. We have both become silent to an extend.

My world slowly empties, like the world of my mom. The decisions are too difficult some days and my mom's suffering breaks my heart.

She has been admitted to hospital on Thursday night in ice cold weather, with pneumonia and has since been on oxygen. I hate to think about the physio tryinng to get the infection from her lungs with her strong hands on my mom's frail body. Should we not?! She can barely breathe and has lost all body fat. We are near to the end. Days, weeks... I am not sure we can talk about months any more at all.

The difficult decision is what do we stop doing. Antibiotics? (she is on the seventh range this year after an earlier mouth infection and bed sores). I don't know. I feel utterly lost. I love her so very much, and can only pray for relief and for tender care. We are both on the edge of sanity I think. Too much.

Oh how I HATE the insensitivity of some nurses that speak next to her bed about her condition and speculate the number of days. She cries and I can only wish for this to end for her - by Divine Miracle to give her back to us, or Divine Intervention to take her from us - for now.

Thank you for being here.

 

[choccy]

I hope you find strength for the coming days and that your mum finds peace and release from this dreadful disease. Thinking of you. X

 

[2jays]

My thoughts are with you at this awful time.

With regard to insensitive nurses - I would be tempted to ask the nurse if they would like the same treatment they are giving your mum, given to their mum? I would ask out loud, how can you be do insensitive?
That's what I would like to think I could say, I wonder if I could if I was in your position. It makes me so angry, for myself and on your behalf,to hear about how insensitive people can be.

 

[KTAnneB]

This is my first post on this site but I had to reply to your beautifully written and heart wrenching post. I will pray that you find strength to get through this difficult time. You sound like an amazing daughter.

If you can, let the nurses know (maybe even the Nurse Manager if you can talk to him/her) how sad you feel when the nurses are so inconsiderate about their thoughts. They may be inexperienced or maybe have never actually thought about how they are affecting patients and relatives/friends.

Sending love, prayers and thoughts.

 

[jan1962]

just read your thread. my heart goes out to you at this horrible time. i will pray for you and your mother. my thoughts will be with you. may the lord take notice of the thoughts of a wonderful daughter and releive you and your mother of anymore pain.




my prayers go with you.







jan1962

 

[Haylett]

Charizomai, this world is here, if you need it. It isn't empty. The people here aren't afraid to come close (though I know that cannot compensate for the friends who were lost along the way). Here, you will find a vigil, day and night, for your Mum if you need it. We can't walk in your shoes, but we can walk beside you, for we're all walking on the same path. Hx

 

[TinaT]

I felt your pain as I read your post. This is such a very hard time to endure and my sympathy and understanding go out to you.

I do understand how you must feel when nurses do not respect your mother's dignity. It must be like a slap in the face for you when you see this. The hard thing is that you are at your most vulnerable and where, in normal times when you are yourself, you would complain about disrespectful practice, this is not a time when you are emotionaly able to do so.

Take care of yourself at this most difficult time.

xxTinaT

 

[NeverGiveUp]

I feel so sad for you,

Life is cruel but not as cruel as those nurses, it beggers belief that people can be so insensitive.

My prayers are for you both, may there be peace for you both.

Somehow I don't think those nurses will be going to Heaven.

 

[Charizomai]

Update from the Edge

I am writing to you my friends, my safe haven online after spending another few hours with my mom in the hospital, and also with some of her close friends.

I have Power of Attorney when it comes to to my mom, and yet I feel powerless in this time when I hold her hand, my tears unshed. I told my brother he should come and see her, because she wanted it so badly - and he has been avoiding it for 18 months now. He said he will come next Friday and his flights are booked. But no earlier due to work. The doctor frowned and simply said Friday is a number of days away, and he will do his best. It was clearly not what he expected. She deserves more from him. I am so sorry I feel so judgemental when I say it here! But oh! I am so sad. I try not to be upset about it. He first did not want to come now (at all!) because they had a visit planned for later July and he "cannot jump in a plane every time I say there is a crisis". She has stopped eating. He needs to come - yesterday, last year already. It is beyond crisis. Had those between the two of us. We dealt with those in our own way.

The doctor asked what we wish to do, and I said it would be good if she could be assisted with fluids until Friday, after which we should just keep her comfortable. Am I doing this for her, or for my brother? Both? I don't know any more but believe I must follow my heart, her heart. I told her also that she should not wait for anyone if she wants to join my dad... (he passed away in 2007). But I told her the son she loves is coming to see her if she wants to hang on... I feel I am doing what I can. And yet, I feel I am doing nothing. No enough. God help me.

I heard today the medical sister at the frail care (before I took her to hospital) told my mom - who is a gentle woman who no long speaks nor responds, in no uncertain harsh terms: "you are a christian, why don't you just go to your people...just go!" My mom's best friend told me - so upset about it. I am livid! I understand that my mom is passing on, but why not have compassion... I do NOT want to ever take my mom back there from the hospital. Maybe I would not need to...

I will never ever forget the kind responses I found here when I came to check in. I thank you so much. Please do think of me, and my wonderful mother, who cries when I play her the song, "You, You, You" to which she and my dad became lifelong partners.

I cannot believe I find myself here today...

 

[TinaT]

"you are a christian, why don't you just go to your people...just go!"

Abuse on so many counts!! I think you are living in S Africa but surely this is just not acceptable whatever country you are in or whatever the culture of the so called carer!!

I hope that when you are not in your present terrible situation can find the emotional strength to report this and the other most cruel and disrespectful words which you have mentioned here!

This kind of 'caring' should never be tolerated. What lack of compassion and respect!!

xxTinaT

 

[Sue J]

Dear Charizomai

That song is beautiful, I'm so sorry for your terrible pain and suffering.

Sending love and support.
Sue
xx

 

[FifiMo]

Dear Charizomai,

Your posts have such beautiful energy and your mum must be so proud of you and how you are supporting her during this part of her journey. You have done everything right, you've given her permission to leave in her own time. You have given your brother the choice to join you both or not. You could do no more in that regard.

Having taken care of everything, please spend what time you have left with your mum and accompany her along this part of the journey. Everything else can wait quite frankly, can't it?

Fiona

 

[Izzy]

Thinking of you and your mum and wishing you strength.

 

[rajahh]

I cannot ignore your love and pain, but I truly have no words. I send you love and prayers Jeannette

 

[Charizomai]

Dear Charizomai,
Everything else can wait quite frankly, can't it?
Fiona

Yes, everything else can wait. I told someone yesterday that there is very little I have to guess about, because the past five years we have spend time to talk about what she desires - on all levels, even about the cremation, the service... until she forgot which flowers were her favourite kind I should have asked earlier, and have only my own ideas on that from experience.

I cannot begin to express my gratitude to Talking Point for the ability to come here and find compassion from strangers who are becoming friends. "Charizomai" means (roughly translated) Grace of God through humanity - in other words, kindness. What I experience today...

 

[NeverGiveUp]

Whatever flowers chosen will be the right ones, if you want to put your mind on other things, research the language of flowers and have those which have the right message used.

May it be peaceful.

 

[ClareBear]

I love the beautiful and articulate way in which you talk about your mother and the journey you are going through together.

My wonderful mum has advanced vascular dementia and can no longer stand, speak or communicate (although occasionally she will have a good day and be able to smile and raise her eyebrows in answer to a question), but at all times I talk to her as if she can understand everything I say, even if there is absolutely no response from her.

I totally understand that you no longer want to see your mother suffering in such a horrendous way, but at the same time, do not want to lose the person you love so very dearly. When my mum is having a very bad day, I feel this way.

My thoughts and love are with you and your mother at this very difficult time. You sound like a wonderful, caring, selfless person and I am sure that, although she cannot tell you, she appreciates all that you are doing for her and the love that you are surrounding her with.

xxxx

 

[Charizomai]

Update from the Edges of Us

And again, thank you for the many kind words. I read every entry more than once and allow the words to sink in, so that I will be able to draw from this well of wisdom when the time comes.

So I returned home last night late, and will stay in bed today to get rid of (what has been suggested to be) a cold with runny nose and sore throat. Then I will return Wednesday. In the mean time, I have spoken to her doctor and have told him what happened at the frail care. He was calm, but suggested that I do file a complaint as he was visibly shocked about the lack of compassion. I told her I would like to keep her in the hospital as long as possible.

Her chest is a bit better and she said 'uh-uhh' when I asked her if she has pain. I have to believe she understood me and responded in truth. I played her some music and told her I will return and I hope we get to see each other again, this week or all of us together with her parents one day.

Ps: My brother has finally agreed to come and see her - but booked his flight for Friday. I had to make the call to continue with fluids until then. This is for her, and because I do love him too.. He told me I am a martyr. It hurt me so. It bothers me too...

PPs: maybe I share too much here?!

 

[nicoise]

Dear Charizomai,

I am glad you have made a decision as to how to proceed to get rid of your cold so that you don't risk passing it on to your mother, and that you feel you can step away for a short while to get better.

This is for her, and because I do love him too.. He told me I am a martyr. It hurt me so. It bothers me too..

PPs: maybe I share too much here?!

You did the right thing with regard to your brother - you have also shown compassion for him although he is less than appreciative of how things are and what you do for your mum. Perhaps one day he will understand what you did, and equally will be grateful for the opportunity to have some time with your mother and make his peace.

We all respond differently to illness and loss, and to some it does not touch their hearts in the same way. Do you share too much? No, you just say how you feel at that time - this is a safe place to say those things, and hopefully it helps to get them out of your head, and that you are able to take some support from others here who understand.

In the meantime all you can do is make things as good as they can be for your mother, and yourself; I do believe in karma, even though we may never know what happens to prove it.

Look after yourself, and I hope your mother remains peaceful. x

 

[Charizomai]

Doing the Right thing... Wise decisions...?

I think it is so hard to know if one is doing the right thing... My mom is not eating anymore - except for a spoon of yogurt maybe. And she is taking very little water. I sense we are close to the end, but may be wrong. She is being treated for dehydration at the hospital, but it feels to me that a time is close to opt out of it - for her sake. This is such a hard decision...

I need to find strenght.