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rocmg

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hi all. it has been a while since I posted. Just to recap for anyone I haven't met before, Mum was diagnosed Feb 2009. She went rapidly downhill in her first year. 14 months after diagnosis, my brother took his own life. For about 2 years after that we were all just existing, not living. Me, my mum and dad alone in our house. For the first couple years, even after my brother's death, myself and my dad did everything. I took her shopping, tried to give her things to look forward to, a quality of life. I haven't been an angel. With every new progression, I took it out on her. I shouted, begged pleaded with her to make it stop. Irrational? Yes. Unfair? Highly. Eventually I began to realise there's a limit to what you can give as a person. I thought I could give my all and make a difference. On the night she was diagnosed I promised her I would never leave her. I told her she would live her life through me. I have sacrificed a lot to have her and I don't want to let her go. I love her. I can't deal with this. I can't handle these strong emotions that over boil over into anger. I feel in many ways she has left her body. She is paralysed almost entirely, but has a little speech. Her neck cannot hold itself up to see around properly when she is in the wheelchair. She gets sore, her joints pulled from their sockets. We can't go out much anymore. Her breathing is still quite strong. She refuses the PEG and is getting by on 6-800 calories a day at present but I think her swallow is going. What do I do? I know she will starve to death before MND gets her. I've told her she is being cruel to me to expect me to have to watch that. I told her I'd have to put her into a hospital because watching her starve to death would break me. Should I be forcing her to have a PEG? I'm not ready to loose her. We get a lot of physical help now, with caregivers and sitters. Since she has been diagnosed she has been to respite once. It does my heart no good to walk away and leave her crying in a hospital. Please help, I don't know what to do. I'm so so sad.
 
I am so sorry you have to go through this. Have you asked your mother what she wants? I think it is her choice to make. As hard as it maybe for you and your dad, she has a choice.

You are a good daughter and you have taken good care of her. No one should have to go through any of this. All the emotions you are going through is completely normal. Have you thought about seeking some counseling and maybe get some antidepressants? It could help you during this difficult time.

I will say a prayer to send you strength and peace. We are here to listen anytime you need. I am so sorry I can't be of more help. Just know we are here.
 
hello vickim... i think i will go and speak to my doctor about getting some antidepressants and sedatives if i am to endure this next part, these next months. i feel she is done with life. it holds nothing else for her. i always knew she was terminally ill, but i never thought of her being dead. thank you for your kind words and thoughts.
 
I cannot even begin to fathom how the death of your brother and letting go of your Mom are affecting you. You are exceedingly courageous and so touchingly human. Your Mom sounds very brave also, and seemingly determined to do things her way.

A friend once mused, " I can't do this ALS. How can I possibly get through it?". Her wise sister replied. " How do you eat an elephant? One bite at the time.".

Please do see about anti-depressants. My motto is - Take whatever it takes to get through it. At the end of the day, we're all going to die. It's comforting to me to believe that love lives on. The love you have for your Mom, and she for you, will live on and help you through.

There is light after the darkness. For all of us.

Take heart dear, your sacrifices are not in vain.
 
Isn't ALS an absolute monster? It affects not only the PALS, but sweeps everyone up into it's vortex. It's path of destruction is both wide and deep. You are to be applauded! This has been going on for 4 years! On top of that, the loss of your brother, has added to your depth of sadness and despair.

Of course, as CALS, we make every promise we can to our PALS, it is only natural. We want to support them, to love them, to help them live life to their fullest. The toll on the carer is enormous! NO one can understand unless they have been through it themselves.We are living their life for them as well as trying to live our own life. The grieving process started long ago, and you are almost denied the opportunity to feel anything, because of the fear of falling apart. So, as they weaken and their disease progresses, you too go along the path next to them. When they reach their weakest, so do we. Of course you are angry! Why wouldn't we be? That is the grief finding it's way out. We want life to return to "normal", to a sense of peace, but know that the only way for that to happen, is the ultimate end game! There are no winners in this game of ALS! After 4 years, what does normal even mean anymore. We do "sacrifice" a lot for them, but it has to be unconditional. Just because we sacrifice, doesn't mean that this will keep them alive forever. It is not a bargaining chip with the ALS monster. It takes no prisoners.

Please don't force a PEG on her. If she wanted it she would have indicated this a long time ago. Did she have a living will? She doesn't want to hurt you. She doesn't want you to suffer. My partner, Michel, said I would hate him for what was happening. I told him the only thing I would hate (and still hate) is ALS because of what it was doing to him, to us, to our lives, to our dreams. Is it time for her to go into palliative care, a hospice?

We are never ready to let them go! I remember Michel's neurologist telling me that when the time came for him to go into palliative care and the end was approaching, I would be fighting with fibre of my being. I thought he was exaggerating. He wasn't. Letting him go was the hardest thing I have ever had to do and will be the hardest thing I will ever have to do. It has been just over 6 weeks, and the pain does get worse every day. The pain and suffering we went through was fierce, and now I would go back to it a heartbeat. I am not telling you this to scare you. What keeps me going then? It is the realisation that, yes, I will always miss him and love him, but he is now free from his suffering and has escaped the ALS Monster. As each day passes, I realise how extraordinarily brave he was, how strong we were, how we fought this battle together. Yes, the end was unavoidable, but we made sure we fought every step of the way. You are torn in pieces, and who knows if we will ever put the pieces back together. But whatever happens, be proud of yourself, be proud of your mother. In the end it may not be up to you to let her go, but simply to let life be what it is meant to be.

My only concern, and this is in no way meant to be a judgement of others, is the belief that using anti-depressants will help. They may. But I believe that if the PALS has to battle, then I too will battle with them. What we go through doesn't touch what they go through. One of my favourite sayings, "to overcome others requires force, to overcome ourselves requires strength". We have to go through these experiences, survive, learn from them, become stronger, and honour their lives and ours by ensuring that while ALS may have hurt us, it will not destroy those of us who remain. While all our journeys are so different, they are also so similar. My thoughts are with you and I hope you find a sense of peace and calm in the middle of this malestrom and afterwards.
 
Hullo graham… thank you for your very passionate and lovely message.

To be honest, I thought this journey would get easier… for me as a CALS it has gotten harder. I said I would fight for her, but I realise these last few months I have been fighting against her and we’re losing the battle and that is what makes me so angry. I always said I wanted to do as much as possible for her, so that I would have no regrets. It’s the fact that we’re losing the battle that makes me so angry and frustrated. When I try to imagine how she feels, I can’t. That upsets me too. I want us to be normal, like you said. I want her back, to share in the triumphs and joys of life. I can’t feel any pleasure because she can’t be part of my life.

I look at other people, and how they cope. Everyone seems to cope better than I can. If I give in and stop fighting, it means the battle is over and it’s lost and we’re just waiting for the end. I am so proud of her. If I had been the person with ALS, in her shoes, I would have given up long ago. When my brother died and we found him, she couldn’t even cradle him in her arms and grieve for him. That image haunts me everyday. Her face and her sadness, her limp little body in a wheelchair, unable to raise her hand to wipe her own tears, to touch his face and kiss him one last time. She had to bury her darling son, her special boy. He was 26. I have tried to be strong for her. I don’t want praise or anyone to think I’m special. I know that she is the strong one. But I think in fighting ALS, the disease that became a part of her, I have fought against her, hurt her. I have been unkind and I hate myself for that. I have been a bully, spurring her own when she has no energy or inclincation.

I want to be strong for the next part of this awful journey. I know if she could push a button and go, she would. She is ready for the battle to be over. I’m not, but I’m trying to make peace with that. I have taken a few days away from her to try and figure out how I can change to help her. I have to change something in myself to be able to admit defeat and go back to her and just be there. I don’t want to be angry at her for succumbing to ALS… I’m trying so hard to change how I feel.

Thank you for writing me. I’m sorry you have gone along this path too with your beloved Michel.
 
I wish I had eloquent words to console you, help you and make you feel better. I don't believe you are angry at your mother. You are angry at the disease. You are not angry that she is succumbing to the disease, you knew all along that we all die at some point. You are angry that she has to suffer.

It takes more strength to let go than to hang on. You are that strong. Your words are proof of that and your love is proof of that. You are very brave to talk to openly of your anger. I think all you can do for you and your mom is to love her, hold her hand, let her know you will be okay.

Take a deep breath, and let go. Its not giving up, there is a difference. You are strong and brave and beautiful beyond measure. I am praying for you, praying for peace and strength.
 
you have gotten such good advice here in this post, but I want you to know that I understand, completely the anger and the desire for everything to be over but the fear of what that really means. You are very brave and are grieving so deeply already. I know for me, low dose anti-depressants have been helpful to take the edge off and keep me functioning better. the anger doesn't help you or your mum. four years is a very long time, and as you said, it is only going to get harder.

I hate ALS too.

Bobbi
 
Hi there,

Laurence is on NIV 24/7. I took him out today, just to our local Costa Coffee. It was a huge undertaking but lovely to get him out or the house. He could die tonight...I too do not want to let go. If I remember correctly your mum was rather scared upon diagnosis (understandably), but has made it this far. To me peg makes life easier. It gives an extra option, for food, water and meds. It's a such small thing and although it doesn't prolong life as such it aids its quality. XD
 
Some people handle adversity better than others. ALS is such a monster, that it really puts you through the ringer.The fact that it lingers so long wears you out. The fact that at times you have hopes dash wears you out. The fact that no matter what you do,your loved one is on the slippery slope downward, despite how they act or look. If it were just downhill it would be easier. Instead is is plateaus of no change followed by a downward turn. Very cruel. No one wins, not the patient, or caregiver.
 
I just lost my dad to copd ,my hubbieh has als. Have you thought about hospice? My dad was so tired and I pleaded with him to stay, I couldn't Los e them both. The only control she has right now is to live or die. The state she is in it sounds like death is her choice. Let her have it. I would get hospice in and take time to get your butt out of the house with all that stress I know life sucks. Get on an antidepressant . Her condition is so devastating and she has no control over it. I believe this earth is hell. Death is going to happen. Let her have her dignity. Tell her you changed your mind and you will be by her no matter what she wants. Pretty soon you are going to miss her trouble some self. How would you want to be treated. Love goes a long way. Do whatever you need to get strong and fast. My heart breaks for. You. But you need to act now in a way you don't feel guilty after she dies. Tell her no nursing home.
Please get some help for yourself too. It sounds like everyone is still in shock after your brother.you are a child of God....much love Mila if she doesn't want to eat/drink that's ok.
 
Rosheen, I have thought about you and your Mum often. It is a long road for some of us, and a short journey for others. The long road is so very hard, and all of us on it have our moments if anger and moments of extreme impatience with our PALS. We are only human, and it is impossible for us to be perfect and nice for such a long period of time. There are many words and actions that I wish I could erase, but I can't. All we can do Is our best, and if it isn't our best today, we can just try harder tomorrow. There are not many of us still here from 2009, and I have to believe we are lucky to still be here. It is hard, and will always get harder. But we are for the most part doing good for our PALS, and glad to be able to keep doing it. HUGS, Lori
 
Rosheen, your honesty is so raw, and refreshing. I am so, so sorry you and your sweet mom have to endure this. And your father. I am so sorry for whatever must have tormented your brother so badly that he felt there was no other option. You have been asked to endure too much. And I love how I say "asked," as if we are given a choice in the matter. :(

I would like to share something will all of you, and I hope you take comfort in it. Prior to my mom's ALS diagnosis, I read Donna's Cancer Story. A "mom blogger" I have followed for quite some time (Sheila Quirke- blogs as Mary Tyler Mom), wrote a beautiful, horrible, gut-wrenching blog series about her daughter Donna's battle with a brain tumor. September is pediatric cancer awareness month. Donna battled cancer for 31 months. Each day for 31 days in September (well, started August 31), Sheila chronicles one month of that battle. Of Donna's life. It is the most difficult thing I've ever read. And the most life changing. I see my own little girls in Donna. The photos, her mother's words. God, that woman has a gift with words. Her blog followers skyrocketed. She ended up on CNN. Lots of coverage followed this due to the sharing of Donna's story via social media. Each day I looked forward to, and dreaded, the next post. But I read it again the following September. And this April, two months after my mom's diagnosis, I read it again. But put "ALS" in place of "cancer." Throughout the reading of this, I knew Donna died. So how her mom's theme is "choose hope" was so confusing to me. How do you choose hope in the face of a terminal disease that you watch kill your loved one slowly and cruelly? Post 30 of 31- beautifully explains it. I really encourage you ALL to read the entire thing on her website- this the link to it:

http://www.chicagonow.com/mary-tyler-mom/donnas-cancer-story-2/

But if nothing else, please read the "Choosing Hope" entry. I didn't realize it at the time, but what I took away from this brave mama and her brave baby girl would help me in coping with ALS battle. I am choosing hope.

Peace and blessings to you all.

Jamie
 
well said Lori--

All we can do Is our best, and if it isn't our best today, we can just try harder tomorrow.
 
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