Lost my mother,still not right after 3 years...

billygoat12

Not sure where to start with this post, so I’ll dive right in.

I lost my mother almost 3 years ago, when she was 60. She had some speech issues and went to her doctor. After a couple of months of investigations (initially a mild stroke was suspected), the neurosurgeon diagnosed her with a terminal neurodegenerative disease. At the time, I didn’t know much about it, but knew it was bad. Motor Neurone Disease is a progressive neuro-degenerative disease for which there no known cause or cure. The typical prognosis is 2-5 years. The next year was harrowing for my mother and my family. She had to battle the progressive loss of her motor skills, as her body slowly slipped away from her. She slowly lost all movement - the ability to walk, move, lift things etc. She also lost the ability to speak - heart-breaking for her, as she couldn’t speak to her grandchildren. She lost the ability to chew food, and eventually moved onto a liquid diet that we administered through a surgically inserted tube in her stomach. It was so hard for her, there was literally no hope, and every week brought new progressive challenges to be dealt with, as well as the bleak emotional implications of a terminal prognosis.

It was really tough, and we rallied as best we could. I am very proud of how my father and my brothers did our best to take care of her. We are probably not the most emotionally available buynhc, but we all did our absolute best to help her but in the end the inevitable happened and she slipped away from us.

I was devastated. I had lost someone truly special who I loved very dearly. The most selfless person I have ever met. She never wanted anything for herself and dedicated her whole existence to looking after her family and loving us. She was gone. After that tough year taking care of her, I was physically and emotionally wrecked. I took some time off work and spent it doing nothing really, just making time to spend with friends who I hadn’t seen much of in the previous year and being there for family. Life went on but was somehow not the same.

It’s 3 years later now and I am still “not right”. I get very down, very often. I think about her every day. I have been struggling to get on with life.

I can’t seem to reconcile what happened. It seems so unfair that someone so kind and loving, who never harmed anyone and gave so much love had SUCH a hard time in her final months. It was so so so tough for her. I just can’t get over that. It feels like the universe ‘cheated her’. Why did it have to be so tough for her at the end? I know we only get one go at life, and we never know whats around the corner for any of us. But why was it so bleak, painful and harrowing for her? A silly story springs to mind…during the summer a few months before she passed away, we found a gorgeous little rabbit visiting our garden for a couple of days. It came out of nowhere (we don’t typically get them), but was a nice little source of amusement for us for a day or two. When someone is terminally sick and things are bleak, you welcome any nice distraction, and this was a really nice one for a day or two. We would wonder if he was going to visit, keep watch for him out the window and then laugh and smile at him when he finally arrived for 20 mins or so before hopping on his way. Then one day when my mother was well enough to go outside to see him, he died - right there in front of us. Who knows why, but he was obviously sick or something. I remember being so angry at god/the universe/whatever…that she couldn’t even have this one nice thing for a while. It was almost like a sick joke - a stark reminder right there in our faces that death was all around. This is just a silly example of a litany of little things that just couldn’t go right for her. It was just so relentless. So I think this initial anger at the universe/whatever has, in the 3 years since, just morphed into being resignation to the fact that everything just seems so pointless. I find it hard to make decisions/commitments, and it’s getting to the point where it is impacting personal relationships of those around me, not least my girlfriend of 10 years. I can’t think about the future, I can’t forget the past and I feel more and more guilty for not enjoying the precious life I have and the wonderful friends and family I have been gifted with. I feel stuck in this fog of grief. At the recommendation of my GP I spoke to someone about it, a very nice and competent (well recommended) therapist who helped logically talk through things, but nothing changed. I gave up this (expensive) non-solution after a couple months. I can talk to people about it (my best friend, my brother, my girlfriend) but it never seems to help - and I suspect that after three years, there is nothing really left to talk about. There is no amazing insight to be unlocked that will heal all.

At least once a week, ‘fresh grief’ will hit me once again and I’ll spend the evening really down, sometimes crying, hiding out in my bed. I feel like I have a huge hole in my heart. The thing is, I am not so sad for me as such. Of course, I am sad that I lost her and I miss her terribly, but I am more sad (1) for her that she had such a tough, unfair, relentlessly hard time at the end and (2) for my family... her grandkids that won’t get to grow up with her love, my father who is alone now etc. Last night I woke up crying twice after dreaming about her. After 3 years, this can’t be normal, is it?

My reasons for posting are that I am wondering;
-Is this ‘normal’? I know there is no ‘normal’ when it comes to grief - but what I mean is…is this just how life is after you lose someone? Maybe you’re just changed forever and you learn how to operate and deal with life in this new framework.
-Has anyone else had similar experiences, that persist so long after their loved one has passed? I had this romantic notion of “finding peace” with it by now, and being able to live a full and rich life, treasuring the memories of my lovely mother. But that hasn't happened - just this sick cycle of sadness, and the horrible sense that my own life is slipping by.

blankname!

Hi,

I'm so sorry for your loss. My mum passed away just over a year and a half ago at around the same age as your mother. Like your mum, the last few weeks of my mums illness were awful both for her and the rest of the family. Some days were so horrific that I still look back now and just break down and cry at what she had to go through. It's never easy and I get good days and bad but I try my best to focus on all the happy times my mum had during her life.

I truly sympathize with you and I hope the knowledge that your mum loved you and knew that you loved her will help you. You looked after her when she needed you most and that is something that would have meant the world to her. You'd be surprised at the number of people who would abandon sick members of their family because they just can't deal with the emotions involved.

You asked if you're changed forever after losing someone and I think that you are. The world just doesn't seem right without them there but I think we have to create a new normal for ourselves. My mum lost both her parents quite young and I know that it must have been horrendous for her but she chose to embrace life. She was one of the happiest people I knew, always laughing and joking and I want to try and live my life like that.

Like you, I do think I should have probably found some peace with it at this stage, but I still feel bitter at what happened and what my mum had to go through. I suppose I just wanted to reply to your post because it struck a chord with me and I just wanted to let you know that there are others out there who are feeling what you're feeling.

Again, I'm so sorry for your loss.

PLL

Hi,

I'm so sorry for your loss, I haven't been through losing a parent and can't imagine how hard losing your mom in such a way could have been. I'm not sure I can give much advice but I just wanted to something, as a mother myself the thought of having my family around me doing everything for me when I need the most, would mean the world to me. I know your mother couldn't say it to you but I'm sure if she could have she would have told you. I can understand how her suffering affects you still, it does seem unfair and you will never forget it. However, some people suffer alone with no family to love and care for them. No doubt you mother was a wonderful woman and she was lucky to have her loving family with her right to the end. In the end that is all that matters to a mammy, her family.

I do hope you get some advice off those on here that have been through a similar experience. Most of all I hope you find peace, to enjoy your life as your mother would hope.

doctorjohn

Please go to your GP and explain what you have explained here.

clappyhappy

I also am sorry for your loss.
Both my parents have died, my mum was only 44 when she died 19 years ago and my dad was 62 when he died 9 years ago. When I think about my mum which is most days I get a sadness all over me that is hard to shake off. She was so young and was about to begin to enjoy life. I was the eldest aged 20 and youngest was 11, 2 more in between. She had so much to look forward to. But a mistake by her dr to follow up on her symptoms resulted in her dying from cancer. I am almost at her age now when she first got diagnosed, and the thoughts of that make me so sad to think that she was so young and had so much more living to do.
Does it go away? No!!!
Does it get easier? Just a little.
Do I think about her? All the time.
Do I still get upset? Yes, especially when I think about how she would have loved her 12 grand kids, and how they would have loved her.
Am I still angry? Very much so.
Do I leave it effect me? No, you have to try to look at the positives, be thankful for the time we had together, think how proud she would be with the 4 of us.

There is no easy answer or solution, but you have to to try and pick yourself up. She would not like to see you like this. Yes you are angry, resentful and very upset, but you have to live your life as best as you can. I'm sure your girlfriend, dad and family are worried about you, speak to a dr or counsellor.

Obviously I also miss my dad, but my mum was so so young. Xx

Immaculata

I'm very sorry for your loss.

Yes, I think this is ‘normal.' Your mother's dying was a terrible process for the poor woman and for you and the rest of the family. You are still grieving after three years. That's perfectly normal, in my opinion. I mean, I don't think you will be feeling this bad forever, but the way your mother died was one of the most difficult ways to deal with. It's one of the most terrible things that can happen to anyone. And she was, from what you say, a lovely person who you loved deeply. Of course you're still feeling her loss. Even if she'd been perfectly healthy and had died suddenly from some painless ailment, you'd still be grieving now.

The episode with the rabbit would really make you feel like the universe was out to get your mother, I can totally understand that. Dreadful.

My father died of bone cancer just under three years ago. He had great care from the home care team of the local hospice but the whole thing was still, obviously, extremely difficult and upsetting. I loved him and he loved me but we fought plenty of times, and I'm not in the least a softhearted person. But at the beginning of August it'll be three years. If you'd asked me before all this happened, I would have thought that three years was lots of time to get over a bereavement. But now I'm actually in the situation, I know it's not. I'm not as upset as I was at the beginning, when for the first year or so I couldn't think of anything else; I don't have trouble dealing with day to day life, but daily, several times a day actually, I think of him and the loss hurts so much it brings tears to my eyes.

It just takes time. Lots of time.

I know what happened to your mother was abysmal beyond words, and I'm not making light of that, but one of my cousins suffered a spinal injury that paralysed her from the neck down. She couldn't eat or drink or move. Without a device in her neck, she couldn't breathe or speak. That was brutal. I had thought the way my father died was bad but this was worse. Going to visit her in the hospital was difficult but it gave me a lot to be grateful for in my own life. Eventually my cousin killed herself by refusing treatment. I would say your mother' condition was as bad as my relative's paralysis. I know it sounds terrible to say, and I don't want to upset you further, but at least your mother did pass away and although it's awful that she died before her time and in such a way, at the very least, she is not suffering anymore.

My dad wouldn't have wanted to linger in weakness and feeling ill and unable to enjoy a full life. My relative didn't want to stick around if it meant years of being stuck in a hospital bed unable to move. Your mother, I am sure, wouldn't have wanted to linger on with such a terrible illness. It's the illness or the injury, I think, that make the grief worse. Bad enough that they died, but they suffered first. Salt in the wound. I had to flip that on its head and try and make myself see that my dad's and my cousin's death were at least an end to their suffering. That thought helps a bit. Getting the condition your mother had or cancer like my dad or paralysis like my cousin are bad luck and the sheer randomness of it makes it difficult because there's no way to avoid it. The unfairness of it is so hard to come to terms with. I remember thinking (rather bizarrely) when my dad was first diagnosed that it was so unfair that he was ill, but then it occurred to me that a large percentage of the population of Europe died during the Black Death and that wasn't fair either. I know it sounds weird, even laughable. But the fact is that terrible things happen. A terrible thing happened to your mother, and to you and to your family. It's not much, against that, to say, 'well, at least it's over.' But at least it is over. Your lovely mother cannot suffer anymore. That is cold comfort, I know, but it is a fact.

I try to do things that my father would approve of, to honour his memory and make myself happier at the same time. I support the charities he supported as much as possible. My family and I do a bit of fundraising for the Irish Cancer Society. I look after some friends of his who need looking after. Little things like that. I have photographs of him and some of his stuff around. I'm not afraid to talk about him with people who knew him. I use the mental and physical tools he gave me, even phrases he used, every day. He is remembered. I think it really helps to have small ways to pay tribute to the ones we have loved and lost.

Your mother is remembered too, and how many people are as cherished in memory as your mother is?

The things that helped me were to get closer to my grief and to get further away, which I know sounds a bit bizarre. It means that I sought out people who'd been through the same thing, and at the same time, I tried to distract myself and take a bit of pleasure in life. So, I think if you don't mind the suggestion, that you might want to talk to other people who have been through the same thing. If you call your local hospice, or the Irish Motor Neurone Disease Association, they probably either have a group of folks to talk with, or can suggest a counsellor who has lived experience of what you've been through. It can really help, over time, to think about the past in the company of people who know how you feel. And equally you might like to think of ways you can take your mind off it at other times, maybe make a bucket list, or devise some treats for yourself. It sounds sort of frivolous, but to make plans to do enjoyable things even if it doesn't appeal to you can help you start to think about the future. Whatever you decide to do, you know your mother would want you to not be sad, so you have to take one step at a time while you figure out ways to get this horrible experience into perspective and how to keep going without sadness dogging your footsteps, although obviously you're not going to wake up one day without a care in the world.
Your mother loved you and would want you to be happy.

Like I said earlier, I am still not right after losing my dad nearly three years ago, it's still a daily thing with me, but it really does get better. Take one day at a time.

I'm sorry for the length of this.

You have my sincere sympathy.

Cantremember

I'm not very good with long posts but your OP moved me and I want to say this: I think you have been asking a question that can only continue to hurt you. It's like being in a maze and convincing yourself that a path you have tried a thousand times and that has failed you, will work if you try it again.
The universe is blind. It blunders chaotically on its way crashing into lives with diseases and wanton savagery. It doesn't serve up justice. It serves up nature. Your mothers selflessness and love was rewarded in you. It was rewarded in her family when you nursed her and stayed with her in her need. You see, maybe we are here to be the ones to bring mercy and justice to each other. Maybe the answer to your question will be found when you gather those you love and with them work to extend the selflessness and love of your mother in other lives. Start with yourself. You have suffered too long with a question whose answer isn't found in words but in loving and thoughtful deeds. I wish you peace.

billygoat12

I just wanted to say a special heartfelt thanks to everyone who responded. I know I haven't posted an "update" or continued the discussion here, but I want you all to know that I regularly look at your kind words here and they give me great comfort. Thanks.