Lost

Dear Buddylyn,

this is so painful isn’t it, the subtle shifting of allegiances when someone dies after such an intense time.  I don’t have children, but stepchildren I have only known a few years. My husband thought that we would hang together as a family without him, but I have no certainty. We are having to negotiate a whole new relationship now that their father has died. They are gravitating back to their lives and their partners. In many ways I’m glad they have lives and supportive partners who have missed their attention whilst they were focused on supporting their father as he died. However the small things that tell me that the centre of gravity of our family have changed are so exquisitely painful to me. I cannot expect anything from them and must be grateful for what comes my way. I feel relegated to a ‘hanger-on’. I am jealous of their relationships and the way their lives will gradually resume - albeit without their beloved father. My life is uttterly utterly changed and the loosening ties with them hurt the most of all. I think we just have to adjust to this, along with so many other things. I have to make a very big space in my heart for the pain this brings me. 

I often think it would have been easier for everyone if I had died instead of him. Not so many people would have suffered. My husband had so much to live for. However, I would have left him dealing with this pain, and all I can do is make the best job of it I can. He’s been denied this day, I will do my best to appreciate it as far as I can. 

I am so sorry. 

Dear Leintwardine

thank you for replying, I feel for you, knowing exactly where you are coming from. I was beginning to feel I would be better off not here, but hearing there is someone else out there suffering the same helps a little. I have felt a selfish withdrawal from life, amid the feeling of not being wanted or loved by anyone. My whole life has been my family and that has come to an end in more ways than one and finding it difficult to move forward.

virtual hugs

Buddylyn

Dear Buddylyn

I recognise you (sadly) from the GBM4 board. I also lost my husband to this terrible disease 18 months ago now. My kids are younger than yours which in some ways is helpful (because they still need me - aged 17 and 20 when he died) and in some ways is not, because they were far too young to experience something this devastating. 

Although they need me, it's been lonely too because my youngest went away to University in September, so it's an empty nest most of the time. I decided that I would need to make a new life for myself that does not depend on them, which of course is easier said than done. I have found local walking groups and an art class the most helpful overall. I tried bereavement groups but it was not for me, although I find this online one very supportive. When the kids are home I'm so glad to see them of course, but my life is about other stuff now too.

18 months on, things are much better. I hope you can draw some comfort in that. Recently (through a storm of tears) I poured out my heart to a friend who is also recently bereaved. I felt a bit guilty about doing that, but he answered in a kind and helpful way, basically saying that we had been through an incredibly distressing time but that we had responded with love and compassion, which is all we could have done really. I'm sure this applies to you too and I hope you can draw some comfort from it.

Sending you a hug.

I also want to put in a lighter note here, which made me laugh out loud and feel determined to prove my son wrong. When his godfather asked after him, he said that he was deeply sad but excited about the future (which I was so glad to hear). He then said: 'But I'm worried about mum, because ... well, I'm at the start of my life" !! Me all of 54 haha. Hope this raises a smile.

I am so sorry for your loss.  I lost my own husband 5 months ago, while I was in the midsts of receiving high-dose chemo, so I was in such bad shape I couldn't even lift my head off the pillow.

Gerry's death was a shock, but not a surprise as he had had multiple myeloma for 12 years and had recently been diagnosed with a heart condition.  I had a great deal of guilt that I was unable physically to do all of the necessary things (arrange the funeral, the memorial, the coffee at my house afterwards, etc.) but my 22 & 23 year old kids stepped up and did a magnificent job while I was in bed, unable to walk downstairs.

I think you should not worry overmuch about your sons shifting their focus.  This is the nature of relationships, they ebb and flow, and their spouses may be feeling the need for a bit more attention.  The situation will go back and forth, I feel certain that when you need them, your sons will be right there!

My youngest has been in Vienna since January for university, my oldest graduated from college last year and spent time in Alaska on an internship.  When I got my diagnosis I hesitated to tell her as I didn't want her to leave Alaska early, but as soon as her time there was finished I called her and she came home to be my caregiver.  So I'm coming from a place that is much different from yours, my advice and comments may be useless, but I do hope they help a bit!

It sounds like you are fortunate to have loving sons who take their responsibilities seriously.  I have no doubt that they will respond positively if you tell them you need more of their time for a bit longer.  That's just what life is, sometimes!

Hoping for the best for you - many happy memories and good, reflective times.

Dear Modeknit

How sad for you dealing with everything while going through your own treatment and journey. How inspiring to  hear about your children dealing with all the arrangements. 

That point of guilt I empathise with as although I could do some things to help my husband I couldn't lift him. Even though he lost so much weight. 

Yours is a tremendously  positive message. Also very insightful. How are things for you now? 

My daughter's at college  with a boyfriend and working part time. So I try to make the most of us together when I can. I hope family bonds stay strong xxx

Thank you so much for your kind comments!

You ask, "How are things for you now?"  Well, I can't walk well, I can do about 15 feet before I fall, but with a walker I do much better. I can get up and down stairs if I have a good bannister and enough time.

Every day I force myself to do a bit more, a few extra steps, another trip up and down the stairs to let the dog out, etc.  I want to walk again, unaided, but I'll take the walker if that will be the only way.

My chemo was CODOXM, which is very high dose.  After two months post chemo I still sleep about 18 hours a day.  I'm taking oxycodone for the continued pain in my back (two crushed vertebrae, which doesn't help the walking, either...) and probably will have to take it for the rest of my life.  If my husband were here he'd tell me that was the natural course of things because my family's all from West Virginia and one can't escape the curse of  "hillbilly heroin", even after moving to Minnesota.  A sad joke, yes, but it makes me laugh!

Good luck to your daughter at college.  I cannot WAIT for my son to get back from Vienna.  He's taking two weeks with his girlfriend in London before coming home in May. I lived in London briefly when I was his age, so he promises to visit my old stomping grounds (including the McDonalds at Trafalgar Square where I worked!)

Gerry and I had 25 excellent years, and he continues to shape my sense of humor.  I am a very lucky woman, all things considered.  My insurance is excellent (Minnesota is a stellar state, our healthcare is so dependent on where you live and how much your politicians treasure their constituents lives...)  Many folks don't have insurance as good as mine, and even with the excellent insurance there has been over $30K of out of pocket co-pays, etc., for my treatment.

If only we could be as forward thinking as other industrialized nations about our citizens' healthcare.  Sorry to get political, I hope no one is troubled by my thoughts.

Hi. I lost my John 6months and two days ago.  Where that time went I do not understand.  The six weeks prior to his passing seemed to go so slowly. Yet the last six months has gone by so quickly. My daughter phones and asks if I want to go to shops or to pick up a parcel with her. I say yes so quickly that I have the image of a puppy who has seen his lead in his masters hand.  I too feel lost and lonely.  Friends keep saying to go out and be with people but they do not understand it's a loneliness that nobody else can fill.  I know they are trying to help but sometimes it sounds so trite I want to scream.   My son charged up his dad's mobile tonight and I read the last texts he sent to me and howled like a wounded animal. It seems like every day and everywhere I look there is another reminder of what I have lost.   I do have periods of a couple of hours at a time when I am ok but then I turn to say something to him and he isn't there. I too asked why couldn't it have been me but now realise I would not wish this suffering on him.. Realising that has helped me a little.  I hope you can find something that helps.

Big hugs to all on this awful journey

Dear Sandypops

I completely know what you mean. I felt it can't  be that far along time wise. It's an empty space that can't just be filled like that. It's your mind and body still trying to figure everything  out. 

It's your journey and you have us to fall back on.

I'm 8 months on and dreaming more about my husband wake up and feel absolutely confused. I'm  sending best wishes there can be lighter days and memories  can also make you smile. Xxx

Thank you so much for your kind words.  I am trying to put one foot in front of the other but some days I just want to sleep in the hope that I will see him in my dreams.